Loose Connections (November 1997)

Loose ConnectionsLoose ConnectionsThis Issue Is Devoted To The Topics Of EDS And Pain

Chronic Pain is a Manifestation of the Ehlers–Danlos SyndromeAnubha Sacheti, Judy Szemere, Bruce Bernstein, Triantafyllos Tafas, Neil Schechter, Petros Tsipouras“Reprinted by permission of Elsevier Science, Inc. Journal of Pain and Symptom Management, Vol. 14,

No. 2, pp. 88–93. Copyright 1997 by the U.S. Cancer Pain Relief Committee.”

Views expressed herein are only those of the authors, and should not be construed to represent theopinions or policies of the Ehlers–Danlos National Foundation and it’s elected officials.

Abstract The Ehlers–Danlos syndrome(EDS) is a group of heritable systemicdisorders of connective tissue manifestingjoint hypermobility, skin extensibility andtissue fragility. Although the presence of painhas been documented in the various types ofthe EDS its natural history, distribution andmanagement have not been defined. Weconducted a semi–structured interview in 51individuals affected with different types ofEDS. The overwhelming majority ofindividuals reported chronic pain of earlyonset involving several joints and refractoryto a variety of pharmacologic and physicalinterventions. Our data shows that chronicpain is a common manifestation of EDS.

Key Words: Ehlers–Danlos syndrome,chronic pain, heritable disorders ofconnective tissue, natural history, analgesics.

Introduction

The Ehlers–Danlos syndrome (EDS) is agroup of heritable disorders of connectivetissue characterized by varying degrees ofjoint hypermobility, skin extensibility, andtissue fragility [Beighton, 1993]. Pain is afrequent yet poorly characterized clinicalfinding in EDS [Beighton, 1993]. Ninedifferent types of EDS have been described,each clinical type distinguished from theothers depending on what system is primarilyinvolved. Most of the types of EDS areinherited as an autosomal dominant trait,although X–linked and autosomal recessivetypes have been described [Beighton, 1993].The diagnosis of EDS is clinical. Althoughdiagnostic criteria have been promulgated foreach of the different types of EDS, it is

impossible to determine the exact type of EDSin a substantial proportion of affectedindividuals [Beighton et al., 1988]. Thevariable degree of clinical expressionprobably accounts for the underdiagnosis ofEDS and hence the lack of accurate figures ofprevalence for the various types. EDS type IIIis the most common form of the disorderpresenting with generalized jointhypermobility frequently complicated byrecurrent joint dislocations [Beighton, 1993].Affected individuals are often unable toambulate because of joint instability. EDStypes I and II whose cardinal manifestationare skin fragility and generalized jointhypermobility are the best recognized formsof the disorder [Beighton, 1993]. EDS type IVis an uncommon type of EDS but also oneassociated with the highest morbidity andreduced life expectancy [Beighton, 1993].EDS type IV is associated with spontaneousrupture of internal organs, i.e. arteries,intestine, uterus and to a lesser degree withskin and joint manifestations.

Although the presence of pain has beendocumented, its contribution to the overallmorbidity associated with the disorder hasnever been assessed, nor has its scope andintensity been formally investigated. Theimpetus for the present study was provided bythe findings of Lumley et al. [1994] whoreported that pain significantly affected thepsychosocial functioning of individuals withEDS. The present study indicates that chronic,frequently debilitating pain of early onset anddiverse distribution is a constant feature inmost individuals affected with different typesof EDS. The presence of pain in association

Department of Pediatrics,University of Connecticut Health Center,

Farmington CT (A.S., J.S., B.B., N.S., P.T.),Center for Children’s

Health and Development,Saint Francis Hospital and Medical Center,

Hartford CT (B.B., N.S.),Department of Biology,

University of Athens, Greece (T.T.).AS and JS contributed equally to this paper.

Corresponding Author:Petros Tsipouras, MD

Department of PediatricsUniversity of Connecticut Health Center

263 Farmington AvenueFarmington, CT 06030

Vol. XII, Number 4 The Official Communications Link Of The Ehlers–Danlos National Foundation November, 19976399 Wilshire Blvd. Suite 510 Los Angeles, California 90048 (213) 651–3038

Continued on page 8.Continued on page 7

In This Issue...Chronic Pain is a Manifestation of theEhlers–Danlos Syndrome ..................... 1MAJOR Fundraising Event ................. 2Notes From Nancy ............................... 2The Chair’s Connection ........................ 3Manuscript Guidelines .......................... 3The Executive Element ......................... 4Branch News ..................................... 5–6Wish List ............................................... 9Learning To ManageFibromyalgia Syndrome ..................... 10Membership Dues ............................... 13Branch Bylaws Committee Update .... 13Guidelines to Select a Pain Unit ......... 14LettersTo The Editor ........................... 15Memorials and Honorariums .............. 16Donations ............................................ 171998 Learning Conference Update ..... 17The International Ehlers–DanlosSyndrome Network (I.E.D.S.N.) ........ 17Back Issues .......................................... 18Membership Form ............................... 19

Mark your calendars and plan on attending ifyou can. The EDNF is hosting it’s first majorfundraising event, “Comic Connections” withHARHARHARHARHARVEY KORMANVEY KORMANVEY KORMANVEY KORMANVEY KORMAN (yes, you read his namecorrectly!) and YARMY’S YARMY’S YARMY’S YARMY’S YARMY’S ARMYARMYARMYARMYARMY on Sunday,June 14, 1998 at the Olympic Collection inLos Angeles, California. This black tie comedynight will feature Harvey Korman and manyother well known comedians.

The Foundation is indebted to Harvey Kormanand wishes to extend our gratitude to him for thetime and dedication he has given to this project.The purpose of this event is not only to raisefunds for the EDNF, but we are also seekingmore exposure for EDS as well as theFoundation nation wide. More details to followin future issues of Loose ConnectionsLoose ConnectionsLoose ConnectionsLoose ConnectionsLoose Connections and onour new web site: http://wwwhttp://wwwhttp://wwwhttp://wwwhttp://www .ednf.ednf.ednf.ednf.ednf.or.or.or.or.orggggg

L ooseConnectionsPublished quarterly by the

Ehlers–DanlosNational Foundation

— Founder —Nancy Hanna Rogowski

1958 – 1995

Executive DirectorLinda Neumann–Potash, R.N., M.N.

PresidentNancy Regas, R.N., M.S., M.F.C.C.

Vice PresidentKaren Skrocki Czerpak, R. N.

VP for Patient AdvocacySusan Stephenson, R.N., B.S.N., C.C.R.N.

SecretaryMeryl B. Brutman, M.P.H.

TreasurerHarold Goldstein

Board of DirectorsDarlene A. Clarke, R.N., M.S.N., Chair

Meryl B. Brutman, M.P.H.Maggie Buckley

Karen Skrocki Czerpak, R.N.Harold Goldstein

Linda Neumann–Potash, R.N., M.N.Nancy Regas, R.N., M.S., M.F.C.C.

MedicalAdvisory Board

Petros Tsipouras, M.D., ChairPatrick Agnew, D.P.M.Robin Bennett, M.S.William Cole, M.D.Mark Evans, M.D.

Richard Wenstrup, M.D.

Medical ConsultantsPat Aulicino, M.D.

Peter Beighton, M.D., Ph.D.Peter Byers, M.D.

Sheldon Pinnell, M.D.F. Michael Pope, M.D.

Catherine A. Stolle, Ph.D.Alan Weinberger, M.D.

EditorsDarlene A. Clarke, R.N., M.S.N.

Karen Skrocki Czerpak, R.N.Harold Goldstein

Linda Neumann–Potash, R.N., M.N.

Designer & Publisher Keith G. Clarke ([email protected])

That leads to my next point. If in fact you areone of those persons who needs to listen, thefirst step comes in the acceptance of theowner’s definition. All too often our lack ofunderstanding leads to a feeling ofpowerlessness; therefore we resort to what iseasier by saying to the owner that the painshouldn’t, couldn’t possibly be there and if it isthere, it must be the owner’s fault. This createsa defensive posture with the owner of the pain,and then, time is wasted on justifying the paininstead of trying to interpret and respond to it.The game begins. The owner of the pain isasking, “Do they believe me?” While the healthcare providers are asking, “Do we believe thestoryteller?” Not only is time wasted, but thechances of building a relationship based ontrust is greatly damaged.

Pain is an inescapable part of life. Without itwe would be placed at greater risk because wewould never know when the boundariesbetween safety and danger are crossed. Wewould never know when the body is crying forhelp. So in that case, pain is a necessary part ofour existence. The challenge to discover howbest to interpret it and how to shut off the alarmwhen we have heeded its warning. There is noone in this life who has eluded pain from theirlife’s journey. The task at hand remains to honeour listening skills whether we be the owner ofthe pain or the helper. We never know when ourbell will ring.Warmly,Nancy L. Regas

Notes From NancyNancy L. Regas, RN, MS, MFCC — President, EDNF

This newsletter has focused on a topic thatmost people would just as soon never have toconfront; PAIN. Pain can be an aggravating,limiting, overwhelming entity that is confinedto the person enduring it. Because it cannot beseen, touched or heard, but only experienced byits owner, it lends itself to misunderstanding byothers. Pain can be easily dismissed by othersbecause they cannot feel it exactly like itsrecipient. It can also be exaggerated by itsowner because it cannot be officiallychallenged. Those opposite ends of thespectrum create an antagonistic relationshipwhich contradicts the goal of health. How thencan we live with pain since it doesn’t seem tobe going away? Do we really want pain todisappear forever?

It is important to understand the function ofpain. Pain is an alarm that goes off internally tosignal its owner that adjustments need to bemade somehow. All too often we ignore thesignal at its first sounding causing it to getlouder and more intense. Finally when we tryto do something, it is too little too late. We mayeven try to hush the sound withoutunderstanding its cry hence we are surprisedwhen it returns with greater force or greaterfrequency. Sometimes comprehending itsmeaning in our lives comes with relative ease ifwe stop and really listen; other times, however,it takes much investigation and the assistance ofmedical personnel who are willing to listenwith us.

November, 1997 Ehlers–Danlos National Foundation — Page 2

Fall is quickly slipping away and Winteris rapidly approaching. As the seasonsundergo change, so has the EDNF. It iswith extreme pleasure that I announcethe most recent change for theFoundation. We now have the addition ofMaggie Buckley to the Board ofDirectors. Many of you will recall seeingher name linked in Loose Connections tothe Northern California Branch where

she is currently the President, and as a member of the EDNFBranch Bylaws Committee. Maggie is no stranger to theFoundation, she has been an active member since 1991 and isalways helping in whatever way she can. Not only has Maggiefounded the Northern California Branch and served on the BranchBylaws Committee, she brings considerable expertise, skill andknowledge to the Board and the Foundation.

Maggie received a B.A. in Applied Social Relations and herM.B.A. in Accounting. She is currently employed as a BusinessManager and Controller. She oversees all the accounting andreporting functions for a corporation in California. Othersignificant accomplishments Maggie has achieved include: leadingtwo organizations through the steps of Strategic Planning,identifying and administering training budgets, and overseeing theconversion and implementation of accounting software for twodifferent employers. Additionally, she served two years as afundraising volunteer for the American Cancer Society. These arejust a sampling of some of the skills and talents Maggie is bringingto the Board of Directors as well as the Foundation.

Please join me in welcoming Maggie to the EDNF Board ofDirectors. With the assistance of people like Maggie, we will trulyfind a brighter day for individuals with EDS.

Respectfully,Darlene

The Chair’s ConnectionDarlene A. Clarke, R.N., M.S.N.,

Chair, Board of Directors

Manuscript Guidelines for...Loose Connections

1. Manuscripts should be voluntary contributions submitted for theexclusive attention of Loose Connections.

2. The submitted manuscripts should be written in a clear andconcise manner. The author(s) should write in a style appropriatefor lay audience. The content of the manuscript must focus onEhlers–Danlos Syndrome, complications of EDS, currentresearch on EDS, or the day to day issues of living and copingwith EDS.

3. Manuscripts should be submitted on a 3.5" disc in WordPerfect5.1 or higher or an IBM compatible word processor. If this is notpossible, the manuscript must be typed double spaced.Handwritten manuscripts will be automatically rejected.

4. Fancy type fonts, italic, bold and underlines are not to beutilized. We will convert them to our printing style.

5. Manuscripts/discs should be sent to:The Ehlers–Danlos National Foundation6399 Wilshire Blvd., Suite 510Los Angeles, CA 90048

6. A 100 word abstract should be included that stimulates readers’interest in the topic and states what the readers will learn or howthey will be better off after reading the article.

7. Include a title/author biography page. The authors’ biographicinformation includes: name, credentials, position, professionalaffiliation, city and state. Example: Thomas Smith, M.D.,Professor, Department of Pediatrics, Case Western ReserveUniversity, Cleveland, OH.

8. Tables and figures should be placed at the end of the manuscriptafter the references. Tables must be numbered consecutively withArabic numbers and have a title at the top. Figures and tablesmust be cited in numerical order in the text.

9. Number pages consecutively centered at the bottom of each page.Do not justify the right margin. Do not use running headers orfooters.

10. Subdivide the manuscript into main sections by insertingsubheads in the text. Subheads should be succinct andmeaningful.

11. References are placed at the end of the manuscript. Referencesare cited consecutively by number and listed in citation order inthe reference list.

12. Written permission must be obtained from a) the holder ofcopyrighted material used in the manuscript; and b) individualsmentioned in the narrative or acknowledgment. Letters ofpermission must be submitted to the publisher of LooseConnections before publication of the manuscript.

13. If you request that your 3.5 disc or original manuscript bereturned after publication, enclose a self–addressed envelope ormanuscript–sized envelope with sufficient postage affixed.

14. Surveys submitted for publication in Loose Connections mustinclude a letter showing IRB (Institutional Review Board)approval from the researcher’s associated institution.

15. Loose Connections reserves the right to edit all manuscripts to itsstyle and space requirements and to clarify the presentation ifnecessary.

See Our BrandNew Web Site

http://www.ednf.org

Contact The FoundationAt Our E–Mail Address:

[email protected]

We’re On The Internet


The Editorial Board of Loose Connectionsdecided several months ago that the focus ofthis issue would be on pain and EDS. Pain,whether acute, chronic or a combination ofthe two is something that affects nearlyeveryone with EDS.

One of the most difficult components ofdealing with chronic pain is being able toaccurately communicate pain to yourphysician or other health care professional.Pain is very subjective, therefore only theperson who is experiencing the pain knowswhat it really feels like. It’s difficult at best,to convey pain that is located in only one partof the body. Describing the type, locationand intensity of pain in EDS is complicatedby the fact that more than one site is usuallyinvolved. One may have a combinationranging from no pain to severe paindepending on the location.

Now that I’ve listed several reasons whydescribing pain may be difficult, I thought I’dgive some practical tips on how to talk toyour physician about pain. While I’m not aphysician or a pain management expert, myexperience comes from 12 years as a nurse,as well as living with chronic pain on a dailybasis.

First and foremost, you need to have a plan oragenda for each office visit and then listen towhat your physician is asking. Decide beforehand when during the visit are you going totalk about your pain. Timing is extremelyimportant. Saying, “by the way, I’m in a lot ofpain” as your physician stands up and is aboutto leave the room, is probably not the besttime to bring up the subject. Make a listbeforehand of things to discuss with yourphysician, prioritize the list before yourappointment and bring it with you.Preparation and timing are not the only skillsyou will need when discussing pain with yourphysician. You must also be able to accuratelyrate the pain you are experiencing.

The second point I made is to listen to whatyour physician is asking. A very commonquestion, physicians ask in relation to painis; “On a scale of 0–10, with 0 being no painand 10 being the worst pain imaginable, whatlevel is your pain?” This question gives twodistinct boundaries, “O” is no pain and “10”is the worst pain you can imagine. Thereforeyour answer must be within this scale. If youare in severe pain and answer that your painis a level 12, I can almost guarantee that yourphysician will not take you seriously. If 10 isthe worst pain imaginable, answering 12

makes no sense and invalidates yourresponse. Remember to stay within the scale,and pay attention to the parameters. Somephysicians use a scale of 0–5 or a scale of 0–100. While rating your pain will be helpful toyour physician, it does not address multiplepain sites in the body.

I mentioned earlier that often more than onesite is involved and the intensity may differdepending on the site. Using a scale such as0–10 does not take into account differentintensities of pain. I prefer to use amodification of the “Eland Body OutlinePain tool.” Using a body outline allows youto show the intensity of pain in differentlocations throughout your body. You willneed a body outline on a piece of paper and 4different color markers, crayons, or pencils.You can draw a body outline freehand, orXerox one out of a coloring book, or othermaterial. Make sure you have two outlines,one of the front of the body and one of theback. Next choose your 4 colors. Pick onecolor to represent “no pain”, one color torepresent “mild pain”, one color to represent“moderate pain” and one to represent “severepain”. Make sure you indicate on the top ofthe paper what intensity of pain isrepresented by what color. The next step is tofill in the outline using the 4 colorsindicating the intensity of pain you arehaving at the time. Write the date and timeon the page and any other information youwant to include.

The body outline tool gives you and yourphysician a visual description of the pain youare experiencing at the time. If your painintensity changes throughout the day, trydoing the drawing at several intervals. Youcan also use the tool before and after youtake pain medication, relaxation therapy orany other intervention that you use todecease your pain.

The next time you go to the physician, takethese drawings with you. It provides a visualway to describe the pain you are having overa period of time. For me, it’s much easier todiscuss my pain using this drawing ratherthan trying to explain it. Using the bodyoutline drawing is great for kids who are inpain. Look how difficult it is for us as adultsto describe pain, it’s much more difficult fora child. This works well for children over 7but it even works for some younger children.The important thing is to let the child pickthe colors to represent the pain.

There are many other tools available to assistyou. Your task is to figure out what worksbest for you. I realize that for many it’sdifficult to discuss pain with your physician.Keep in mind that once you find the way thatworks best for you it will more than likelylead to effective pain management.

A component of coping and living with EDS islearning to deal with your pain. An importantkey aspect of pain management is to move pastthe point of focusing all of your energy on pain.It is imperative that you learn to accuratelylearn to communicate the pain you experienceto your physician. The “Eland Body OutlinePain Tool” is one such method that will helpyou achieve this goal. Keep in mind that thereare many ways to treat pain, and often times ittakes a combination of approaches. Do not bediscouraged if the first approach does notmanage your pain – employ another method.Eventually, an effective method of pain controlwill be discovered and you will find that thereis life beyond EDS pain!

Sincerely,Linda

The Executive ElementLinda Neumann–Potash, RN, MN

The Board of Directorswould like to extend a

BIG THANK YOU to:Theresa Wong

La PointiqueInternational Ltd.

Turwila WA

For donating a 8' X 10'Pro Display Back–Wall Boothto be used for presentations atprofessional conferences. Thisbeautiful display provides uswith a professional image at

these very important events.


By Harold Goldstein, Director, Local Branch OrganizationOn September 26th, the Board of Directors issued charters to two new Branches, MINNEAPOLIS–ST. PAULand WASHINGTON METROPOLITAN AREA, bringing the total number of chartered Branches to 20.

At the same meeting, the Board of Directors took other actions affecting Branches: it approved a set of standard Bylaws forBranches, drafted by a committee consisting mostly of people active in Branches; it appointed as Educational Co-Directorsfor the Foundation Karen Czerpak, R.N., and Darlene Clarke, R.N., M.S.N. Karen will have the responsibility ofacquiring copies of current publications on EDS suitable for member education or outreach to health professionals, and alsoto acquire a library of taped lectures by speakers at Branch meetings, to be made available to other Branches. Darlene willhave the responsibility for developing educational publications for healthcare professionals, members and thegeneral public. The Board also called upon any Branches that have conducted successful fundraising to share theirexperience by writing brief articles for Loose Connections on how they did it.

Here’s where Branches are being organized, and their Branch presidents or volunteer organizers. (CharteredBranches are shown in BOLD and PURPLE CAPS.)

Phoenix: The group is trying to set up a meeting, and asks any members in the area who are interested to callDebbie Krueger, (602) 978–1016.

Tucson: Robin Forsyth, (602) 579–8351.

SOUTHERN CALIFORNIA BRANCH: A meeting of the Branch will be held on November 23rd at ShermanOaks Hospital. Active support groups meet in Santa Barbara and the San Fernando Valley. Shari Gamson: (818)893–3937 or Rich Scholl (805) 683–8874.

NORTHERN CALIFORNIA BRANCH: On November 15th a dinner and silent auction will be held at theBasque Cultural Center to raise funds for scholarships to attend EDNF’s Learning Conference in Tampa, FL nextsummer. Maggie Buckley, President (510) 947–2358.

WASHINGTON METROPOLITAN BRANCH: At the September 7th meeting, the Branch planned its programfor the fall and the kinds of speakers it would like to hear from. Marilyn Della Badia, President, (703) 924–1220.

TAMPA BAY AREA BRANCH: The golf tournament was rained out, but rescheduled for early October. The Branchhas been busy planning for the national EDNF conference which it will host next summer. The Branch’s lively newsletter,Tampa Bay Connections, prints recipes as well as fund-raising ideas. Peggy Rocha Snuggs, President, (813) 949–1585.

Southeast Florida: Colleen Butcher, (561) 283–9499.

ATLANTA BRANCH: A meeting on September 27th was devoted to support group activity and planning futureactivity. At a meeting on November 22nd, the group will hear a report from April Leaman , President, who willattend the Baltimore Human Genetics meeting; the group is interested in getting information on the new nosologyfor EDS to doctors in the community. Contact Kathy Parrish, Secretary, (770) 338–9570.

CHICAGO BRANCH: A call to the local Arthritis Association produced three speakers for the Branch’sOctober 4th meeting: Dr. Carey Dachman, a rheumatologist, Dr. David Wakely, a psychologist, and RobertHayden, a certified acupuncturist. Pat Damler, Branch President, has run a one–woman professional outreachprogram, lecturing on EDS to staffs of the University of Illinois Family Practice Clinic and the Swedish–American Hospital, at Rockford. On January 3rd, Torsten Muehl, a physical therapist, will talk to the Branch atAlexian Brothers Hospital, Elk Grove Village. Pat’s phone is (815) 568–6216.

MAINE BRANCH: The Branch will meet the second Sunday of every even–numbered month. At the October 12th

meeting, the plan was to videotape the members telling what the EDNF means to them, for showing at the EDNFfundraising event planned for next year in Los Angeles. Samantha Paine–Paradis, President, (207) 442–8779.

BALTIMORE BRANCH: Branch members will staff the EDNF’s booth at the National Human GeneticsConference to be held in Baltimore, October 29th to November 1st. At the December meeting, the Branch willreview its work for the year and plan ahead. Michelle Adams, (410) 879–0548.

Boston: Plans were under way for a November meeting at press time. Robin Neas, (617) 767–4553.

Detroit: Marianne Hoppel, (248) 363–2755.

MINNEAPOLIS–ST. PAUL BRANCH: At its October 7th meeting, the Branch discussed how to get brochuresfor lay people on EDS that doctors can hand to patients. Jackie Collins, President, (612) 934–4420.

ST. LOUIS BRANCH: Janet Dunn, President, (314) 645–4114.Continued On Page 6

ME

MA

GA

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FL

CA

AZ

DC

MD

MI

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— Branch News —

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For Information About Local Branches & Support GroupsYour organizer would appreciate a call from you expressing your interest. If you would like to

set up a branch in your area, write or call: Harold Goldstein, Director, Local Branch Organization,4701 Willard Ave., Apt 934Chevy Chase, MD 20815

(301) 656–2053

Omaha: First meeting will be held in January. Cheri Lynne Woodward, (402) 451–8905.

Manchester: Tom and Tina Roe, (603) 624–7947.

CENTRAL NEW JERSEY BRANCH: The Branch has established these goals: mutual emotional support andfriendship, and development of a local network of medical professionals familiar with EDS. Next meeting willbe November 9th in East Brunswick. Lisa Schoenberg, President, (732) 254–1288.

SOUTHERN NEW JERSEY BRANCH: Cathy Bowen, President, (609) 625–7975.

NEW YORK METROPOLITAN AREA BRANCH: On October 4th, the Branch had its second dinner in anItalian restaurant. La dolce vita? Not at all. Look for Kim’s upcoming article in Loose Connections, “The Effectof Marinara Sauce on Collagen.” City Bank in mid–town Manhattan is giving the Branch the use of a computerroom where members will be taught how to search Medline and how to tap into various EDS websites. TheBranch mails meeting notices, and also runs a “phone tree” four days before each meeting to remind allmembers; this boosts attendance. Kim Christensen, Co–President, (914) 632–7264.

WESTERN NEW YORK BRANCH: The mailing list of health professionals is up to over 800, but must waituntil the new Nosology is published to include accurate, current EDS information. At a meeting October 24th atCrossroads House, Batavia, NY the group showed a film on the Human Genome Project and held a supportgroup session. Lou Van Wert, President, (716) 688–2756.

PIEDMONT TRIAD BRANCH: On November 22nd at the Wesley Long Community Hospital in Greensboro,Deborah Larrimore, a licensed massage therapist, will demonstrate procedures patients can do themselves toalleviate pain. A holiday dinner is planned for December 27th. The Branch has discussed future activities,including speaking on EDS at a meeting of the local nurses’ association, speaking at a State meeting of socialworkers to show that children with bruises are not necessarily “abused children”, getting onto a morning TVprogram and holding a fundraising activity. Charlotte Mecum, President, (910) 722–5879.

Western North Carolina: Hannah Dickson, (704) 253–1323.

Raleigh–Durham–Chapel Hill: Jules Leggett, (919) 722–9443.

NORTHEAST OHIO BRANCH: On September 13th, the Branch held a social and took a historic tour of Clevelandon Lolly the Trolly. The October 4th meeting was devoted to a discussion of coping with EDS. They’ll have theirannual holiday social on December 6th at SW General Health Center . The Branch raises funds through the sale ofsweatshirts, polo shirts, T–shirts (all with the Branch’s logo embroidered), various artifacts engraved with theBranch’s logo, as well as nuts and candies for the holidays. Darlene Clarke, President, (440) 888–7317.

Portland: Shulamit Levine, (503) 775–0058.

PHILADELPHIA BRANCH: The Branch’s newsletter is “The Bugsquasher.” Want to know why? Call RobertaKroll, President, (215) 794–8043.

Providence: Sue Kozlow would appreciate signs of interest, (401) 233–2046.

Dallas: Sarah Tovar, (972) 625–9142.

Amarillo: A meeting is planned for November 1st. Connie Nieto, (806) 293–7361.

Odessa–Midland: Shawanda Cox, (915) 385–1628.

RICHMOND BRANCH: Kim Hayes, President, (804) 739– 0739.

SEATTLE BRANCH: On December 6th, Dr. Jonathan Wright will speak on nutrition at the Burien Library.Barbara Uggen, President, (253) 529–4861.

MILWAUKEE BRANCH: On October 21st, Jennifer Feltz of the YMCA described programs offered at the “Y”for people with disabilities. On November 18th, Dr. Montavon was due to speak on alternative pain managementmethods. All meetings are at Children’s Hospital. Lynn Sanders, President, (414) 679–9682.

NY

NC

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ORPA

NJ

VAWA

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— Branch News —

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Table 2

Chronic Pain Experience

Number of locations Mean ± SD (range)

Mean intensity of locations affected

Mean ± SD (range)

Progressive Pain (%)

Total Sample 8.0 ± 3.3 (0 – 14) 5.3 ± 1.5 (1.0 – 8.6) 43 / 51 (84.3)

Type I 8.8 ± 3.6 (1 – 12) 5.2 ± 3.6 (1.0 – 8.6) 7 / 9 (77.8)

Type II 6.8 ± 3.3 (3 – 10) 4.3 ± 2.0 (3.2 – 8.0) 4 / 4 (100.0)

Type III 8.9 ± 2.6 (5 – 14) 5.3 ± 1.4 (2.3 – 8.0) 24 / 26 (85.7)

Type IV 4.3 ± 3.6 (0 – 11) 5.7 ± 1.1 (4.4 – 7.4) 5 / 7 (71.4)

Table 1

Sample Demographics

Number (%) Age (Mean [range])Gender

(Female/Male)Number with

chronic pain (%)

Total Sample 51 (100) 34.0 ± 12.7 [9 - 70] 42/9 46 (90.2)

Type I 9 (17.6) 27.4 ± 14.1 [9 - 46] 7/2 6 (67.8)

Type II 4 (7.8) 38.7 ± 25.6 [24 - 62] 3/1 4 (100)

Type III 28 (54.9) 36.5 ± 12.3 [14 - 70] 26/2 28 (100)

Type IV 7 (13.7) 33.9 ± 9.2 [15 - 42] 3/4 5 (71.4)

JHS 1 (2.4) 24.0 1/0 1 (100)

Unknown 2 (3.9) 26.5 ± 9.2 [20 - 33] 2/0 2 (100)

JHS: Joint Hypermobility Syndrome

with the absence of a systematic approach forchronic pain management impactsdramatically on the well being of affectedindividuals and, as a previous studysuggested, influences their social interactions.Methods Data were collected in semi–structured interviews with anopportunistic sampling of individualsdrawn from either the University ofConnecticut Heritable Disorders ofConnective Tissue Clinic or attendantsof the Annual Meeting of the Ehlers–Danlos National Foundation heldAugust 15–18, 1995 in Cincinnati.Interviews were conducted by two of us(AS in the General Clinical ResearchCenter of the University of ConnecticutHealth Center in Farmington and JS inCincinnati). The length of interviewsranged from 20 to 60 minutes and inaddition to recording age, sex, and the type ofEDS, three major topics were explored:

1) The experience of chronic pain wasdescribed by a series of questionsconcerning intensity, quality, time ofonset and general progression for eachlocation identified (modeled on theMcGill–Melzack Pain Questionnaire[Melzak, 1975]). Intensity was assessedfor each location on a 10 point analoguescale with 0 = no pain and 10 = worstpain imaginable. Respondents wereasked to describe the quality of eachpain with adjectives. A list of adjectivessuch as throbbing, burning, tingling, etc.was given.

2) Functional impacts of chronic pain wereelicited with a 5 item checklist (sleep,sexual functioning, social relations,physical activity, school or jobfunctioning).

3) Strategies utilized to control pain wereelicited with an eight item checklist(medication, narcotics, physical therapy,heat/cold, massage, bandages/splits/braces, exercises, other).

The strategy for coding the data for purposesof descriptive analysis includedcategorization of specific pain locations,pain quality, coping strategies and onsetperiods (childhood, adolescence,adulthood).

ResultsSample Characteristics

Demographics of the sample areprovided in Table 1. The majority (42/51) of those interviewed were women.

The participants ranged in age from 9 to 70years with a mean of 34, but only 6 were lessthan 20 years of age. For the purpose of thisstudy we relied on patients* reports of theirpreviously determined diagnosis. Fifteen of

the participants were interviewed inConnecticut and the remainder wereinterviewed in Cincinnati. The patientsinterviewed in Connecticut had beenpreviously evaluated by one of us (PT).Twenty–eight (55%) of those interviewedstated that they were affected with EDS TypeIII. Although there are no accurate figuresabout the relative frequency of each EDStype the previous number reflects thedistribution observed by one of us (PT) in theclinic. The remaining 23 were distributedbetween Types I, II, IV and JointHypermobility Syndrome, a phenotypicallysimilar disorder. Two individuals wereaffected with a form of EDS which could notbe typed.

Nature of Pain

Forty–six of the 51 individuals interviewedindicated they had chronic pain over the last6 months or longer (Table 1). Of the adultsonly two (2/45) felt they were free of chronicpain.

Individuals’ reports of pain locations,intensity, and course are summarized in Table2. The mean number of pain locations for all51 respondents was 8.0. Although individualswith EDS type IV seemed to have a

substantially smaller number of painfullocations as compared to individuals withEDS type I and type III, the small samplesize precludes meaningful statistical analysis.The “mean intensity” rating, calculated for

each individual as the mean of theintensity ratings for those locationsaffected, was 5.3 for the total sampleand similar for all types. Forty–three(84%) individuals indicated that theirpain had become worse during thecourse of their life (Table 2).

Respondents identified a total of 13principal locations of their pain,ranging from 22 individuals (43%)noting elbow pain to 41 (80%)reporting pain in the shoulders at onetime or another. Similar numbers ofindividuals reported pain in their hands

(38, 75%), knees( 36, 71%), and spine (34,67%). Interestingly, almost half of thepatients reported frequent headaches and athird had stomach aches. Approximately 70%of all patients reported continuous pain intheir lower extremities, ankles, feet, toes, andhips. The description of pain qualitiessuggested a pattern of significant distress,described primarily as aching, sharp,throbbing or burning.

The locations noted and the time of onsetduring the life cycle for the 45 adults areshown in Figure I. Approximately 50% ofindividuals reported onset of pain in mostlocations in adulthood, although pain inshoulders, knees, ankles, feet and toes beganearlier. However, forty of the forty–five(89%) adults remembered chronic painbeginning in at least one location with onsetin childhood or adolescence.

The percentages of individuals experiencingdysfunction in various areas are presented inFigure 2. Sleep and physical activity weremost frequently noted (70%) with sexualactivity the least, although still substantial(45%). Only 6 respondents (11.8%) noted nodysfunction related to their pain.

Coping Strategies

Respondents identified more than 20major strategies for coping with pain.Figure 3 shows the utilization (numberwho use or tried) of the 7 most frequentstrategies and their efficacy for the totalsample. Additional strategies lessfrequently noted included distraction,diet, TENS, rest, water bed and pillow,craniosacral therapy, shiatsu, energywork, smoking, and use of the

Chronic Pain... from page 1


Fig. 1 Onset and distribution of chronic pain in individuals 20 years of ageand older (N=45).

Fig. 2 Impact of chronic pain on functioning (N=51)

Fig. 3 Strategies used or tried for coping with pain (N=51)

an attempt to cope more effectively withday–to–day pain associated with thiscondition. The need to use multiple copingstrategies suggests that no one approach isuniformly successful.

Alexander Technique. These were used inless than 5% of the cases. Eighty–eightpercent of the respondents had taken painmedications, and 51% had taken narcotics.

Discussion

A number of points emergeclearly from the interviews ofindividuals with EDS. First, andmost striking, is the fact thatmoderate to severe pain is acommon every day occurrencefor essentially all of them. Inaddition, the pain associated withEDS starts early in life andevolves over time. Theoverwhelming majority ofpatients feel that their pain hasgotten worse. Despite theseobservations, we were unable tofind any articles reviewing themanagement of pain associatedwith EDS.

The pain problems associatedwith EDS are complex and notuniform. Most patients affectedwith EDS have pain in several locations.The origins of these pains are probablyquite variable. Some pains are likelysecondary to frequent dislocations/subluxations, some from repeated softtissue injury, or multiple surgicaloperations and resultant nerve injury.

Our limited sample size precludes statisticalanalysis of differences in pain patternsassociated with various types of EDS. Itappears that the number of pain locationsand pain intensity are similar across thedifferent types of EDS with the exception ofindividuals affected with EDS type IVwho identified fewer pain locations.This could reflect the relative paucityof joint hypermobility in that EDStype.

This life–long history of discomforthas compelled many people toexplore numerous coping strategies.Most patients have taken some typeof medication and over half thesample have used opioids. A host ofphysical interventions were also usedby patients with EDS. Physicaltherapy has been tried by many,particularly for pain in the shoulders,spine, knees, and hips. Massage, useof heat or cold, and chiropracticmanipulation are frequently used in

More investigation is clearly necessary tostudy the origin of pain and the efficacy ofspecific intervention in these individuals. Inthe interim, some basic principles of painmanagement could be extrapolated from other

chronic diseases. Certainly a painproblem list should be a part oftheir medical record [Portenoy,1988]. The various types of painthat individuals with EDSexperience may have differentorigins, different intensities, andrun different courses. A detailedpain problem list will allow for amore thorough understanding andtracking of each type of pain andintervention for it. A painassessment technique that isdevelopmentally appropriateshould be taught to the patient andused routinely [Paige and Cioffi,1993]. From the pharmacologicalpoint of view, non–steroidal anti–inflammatory agents (NSAIDs)would appear to have a majorrole, especially if the pain is ofinflammatory origin. It should benoted that the chronic use of these

agents is frequently associated withgastrointestinal, renal, and hematologicconsequences; therefore, they should bemonitored if used chronically. Particularcaution should be exercised in individualsaffected with EDS type IV who areparticularly prone to bruising and bleeding.For moderate to severe pain, an NSAID inconjunction with a weak opioid usually in afixed combination is often used [Acute PainManagement Guideline Panel, 1992]. Thisapproach, in chronic non–malignant pain, isconsidered controversial [Turk, et al. 1994].If used however, care should be taken so

that the NSAID and/or acetaminophendo not reach toxic levels in individualswho take large numbers of these pillsdaily. In those instances, a separateNSAID or acetaminophen can begiven in conjunction with codeine oroxycodon. Opioids, either short actingor long acting, should be consideredfor severe pain. They should bemonitored for side effects, inparticular constipation, which cancause extreme discomfort. Therefore,any individual on chronic opioidsshould take prophylactic laxatives. Anewer drug, tramadol (Ultramä),which is an opioid analgesic may be avaluable alternative to opioids forsome individuals with EDS in chronicpain because it lacks some of the sideeffects traditionally associated withopioids [Sunshine, 1992]. Finally,


Chronic Pain... from page 7


Pentium PC

tricyclic antidepressants may be of benefit.These agents may help the patient sleep betterat night and have some analgesic activityparticularly against neuropathic pain.Neuropathic pain arises from nerve injury andis often opioid resistant.

Non–pharmacologic approaches, such asphysical therapy and exercise may bewarranted but may also be quite traumatic andstressful for this group of patients. Physicaltherapy taking place in water (hydrotherapy),however, may be less damaging to joints andmore enjoyable. Behavioral and cognitivecoping techniques may also be extremelyvaluable. These include hypnosis, breathing,meditation, visual imagery, and other forms ofdistraction.

Obvious limitations of our study are the smallsample size, the over–representation ofwomen in our sample, the potential self–selection bias and lack of a control group.These sampling issues stem from our relianceon the participants of the annual meeting ofthe Ehlers–Danlos National Foundation, ourdecision to utilize an interview approach andour inability to identify an appropriate age–matched control population. These limitationsnotwithstanding, our findings are congruentwith our clinical experience.

In summary, our data reveals that individualswith EDS experience frequent and severe painthrough much of their lives. These problemshave been unrecognized previously in thepublished literature. Because EDS is relativelyrare, no systematic study of pain in thispopulation or its relief has been performed.Extrapolation from the literature on other

diseases allows us a starting point from whichto develop a clinical pain managementalgorithm. EDS should be considered in thedifferential diagnosis of chronicmusculoskeletal pain. Clearly, further researchis necessary to identify the most humane wayto manage the devastating effects of thissymptom in individuals with EDS.

Acknowledgments

This paper is dedicated to the late Nancy H.Rogowski, the founder of the Ehlers–DanlosNational Foundation whose selflessdedication to her cause touched the lives ofmany people. The authors are grateful to allindividuals affected with Ehlers–Danlossyndrome who participated in this study. Weare grateful to Dr. Richard J. Wenstrup,Cincinnati, for his comments. This work wassupported in part by a General ClinicalResearch Center grant (NCRR–NIH MO1–RR–06192) to the University of ConnecticutHealth Center and also by the Ehlers–DanlosNational Foundation.

References

Acute Pain Management Guideline Panel(1992): Acute Pain Management: Operativeor Medical Procedures and Trauma. AHCPRPub. No. 92–0032. Rockville, MD: Agencyfor Health Care Policy and Research, PublicHealth Service, U.S. Department of Healthand Human Services.

Beighton P, de Paepe A, Danks D, Finidori G,Gedde–Dahl T, Goodman R, Hall JG,Hollister DW, Horton W, McKusick VA,Opitz JM, Pope FM, Pyeritz RE, Rimoin DL,

Sillence D, Spranger JW, Thompson E,Tsipouras P, Viljoen D, Winship I, Young I.International nosology of heritable disordersof connective tissue, Berlin, 1986. Am J MedGenet 1988;29:581–594.

Beighton P. The Ehlers–Danlos syndromes.In Beighton P (Ed): “McKusick’s HeritableDisorders of Connective Tissue, 5th edition.”St. Louis: Mosby, 1993:189–257.Lumley MA, Jordan M, Rubenstein R,Tsipouras P, Evans MI. Psychosocialfunctioning in the Ehlers–Danlos syndrome.Am J Med Genet 1994;53:149–152.

Melzack R. McGill pain questionnaire: majorproperties and scoring methods. Pain1975;1:277–299.

Paige D, Cioffi AM. Pain Assessment andMeasurement. In RS Sinatra, AH Hord, BGinsberg, LM Preble (eds) Acute Pain:Mechanisms and Management. St. Louis:Mosby–Yearbook, 1992.

Portenoy R. Practical aspects of pain controlin cancer. CA 1988;38:327–52.Sunshine A, Olson NZ, Zighelboim I,DeCastro A, Minn FL. Analgesic oralefficacy of tramadol hydrochloride in post–operative pain. Clin Pharmacol Ther1992;51:740–746.

Turk DC, Brody MC, Okifuji EA. Physiciansattitudes and practices regarding the longterm prescribing of opioids for non–cancerpain. Pain 1994;59:201–208.

Wish ListThe EDNF is steadily growing and evolving as an organization. In an attempt to meet ourever increasing demands, the Foundation is in need of office equipment.

Below is our “Wish List” for specific items that we need, but aren’t in a position to purchaseat this time.

If you either have the means or ability to donate this equipment, it would be greatlyappreciated. Together... with YOUR help, we will find a brighter day.

Two Plain Paper FAXs,

Your donation is taxdeductible and is sincerely

appreciated.

Some thoughts about EDSby Harm Lok (Netherlands)

Breaking down my body,loosing joint after joint,

It never can affect my beliefand take away my dreams

about walking over mountains,and flying though the sky

When I close my eyes,my world is the same as yours.Thinking over a world without

struggle in any way.Even my body is not perfect,

when pain is heavy,I always look to bright sides around.

And when seemed to disappear,I close my eyes, and

when I open my eyes I know:

Life, even with EDS is valuable to live.Harmw/ Windows 95,

FAX/Modem & CD ROM


symptoms usually occur first when anindividual is between 20 and 40 years old.1However, it must be noted that Fibromyalgiacan sometimes affect children and the elderly.4

Recent research studies have establishedguidelines for diagnosing Fibromyalgia basedon the presence of certain signs andsymptoms.

Pain

The most common complaint from patientswith Fibromyalgia is that they have diffuse“pain all over” – almost like the flu. Althoughin rarer cases, the pain is quite severe anddisabling. More often, the symptoms oftenbegin insidiously and may wax and wane inseverity. In almost all cases, individualscomplain of some degree of paincontinuously. The pain is most often worse at“tender points” specifically located on thebody. Fibromyalgia type pain generally isworse in the morning and late evening andoften is associated with stiffness. Musclegroups that are used repetitively result in anincrease in the level of pain you experience.

Fatigue and Sleep Disturbances

Have you ever awoke after sleeping and feltrefreshed and rejuvenated? Most likely youranswer would be “no.” Immense fatigue isfrequently the debilitating aspect ofFibromyalgia. The fatigue may be exhibited asan overall tiredness and lack of energy, or asmuscular fatigue and a lack of endurance. Ineither case, it can be difficult to performactivities of daily living such as caring for selfor others, performing household chores, goingshopping, or to function effectively at work.Keep in mind that it takes a tremendousamount of energy to deal with having chronicpain and this too can contribute to anindividual’s fatigue.

Approximately 90% of individuals withFibromyalgia complain of moderate to severefatigue coupled with a lack of energy or thetype of exhaustion that is found with a lack ofsleep. In most cases, individuals wake upfeeling tired even after sleeping all night.While their minds may be rested, their bodiesfeel as if they never went to sleep. Many areaware that their sleep has become lighter withfrequent awakenings throughout the night.Scientific studies reveal that individuals withFibromyalgia have abnormal sleep patterns

Individuals with EDS are often also diagnosedwith Fibromyalgia syndrome. Fibromyalgia isa common and often disabling disorder whosecause remains obscure. Fibromyalgiafrequently resembles other disorders such asrheumatoid arthritis and lupus. Individualscommonly complain of widespread musclepain and tenderness, as well as fatigue andexhaustion after minimal exertion. Acharacteristically high “tender point” isevident. For individuals diagnosed withFibromyalgia, learning to effectively cope withthis disorder is essential to one’s emotionaland physical health.

It’s morning and as you awake you realize youare exhausted and you haven’t even left thebed yet. The thought crosses your mind thatfor as tired as you are, you may as well havenever gone to bed. You barely have enoughenergy to get out of bed and care for yourself,let alone being able to care for the children, orgo to work or school. As you struggle to getout of bed, you realize that your body achesall over and you feel as if you are a 100 yearsold. You are stiff and can hardly move. Whatis wrong with you? After seeking one or moremedical evaluations, you finally get theanswer. Your physician informs you that youhave Fibromyalgia syndrome. Such a big wordthat sounds ominous and must mean you havesome dreaded problem. You have never evenheard the term before. So, what is Fibromyalgiasyndrome?

Fibromyalgia syndrome is a common form ofchronic, generalized muscular pain andfatigue. In some cases, the pain is so intensethat it can be incapacitating.1 Despite thatFibromyalgia does not result in serious, long–term target organ damage, it does have anegative impact on the quality of life similarto that of rheumatoid arthritis.2 To effectivelymanage and cope with Fibromyalgiasyndrome, it is imperative that one has a clearunderstanding of Fibromyalgia, its signs andsymptoms, triggering factors and how it istreated and managed.

The term “Fibromyalgia” can be broken downinto fibro (fibros tissue), my (muscles), andalgia (pain and tenderness). In Fibromyalgiathere is pain in the muscles and fibrousconnective tissues which comprise ligamentsand tendons. Therefore, while Fibromyalgiafeels like a joint disease, it affects muscles andtheir attachments to bone and joint deformitydoes not ensue.3

Fibromyalgia can run in families, possiblysuggesting an inherited predisposition. Todate, the cause of Fibromyalgia is not known.It may lie dormant until it is triggered by aninjury/trauma, stress, or a sleep disturbance.There are other theories as to what triggersFibromyalgia. One theory is that the syndromeis caused by an infectious agent such as theinfluenza virus. Other suspected causesinclude extreme physical deconditioning ofthe nervous system brought on by a lack ofexercise, and changes in muscle metabolismthat can result in decreased blood flow to themuscles with fatigue and decreased strengththe end results.4 More recent research pointsto two key chemicals of the Central NervousSystem that facilitate the regulation of painmessages transmitted to our brain. These twochemicals are substance P and serotonin.Substance P begins the pain–signal processfollowing tissue injury. Serotonin reduces theintensity of pain signals in the transmission ofpain and is very important in sleep regulation.Low levels of serotonin and elevated levels ofsubstance P have been found in individualswith Fibromyalgia. These findings support thetheories that individuals with Fibromyalgiahave unusually high pain intensity messagestransmitted to their brain as well asdeficiencies in the inhibition of pain.5 Oneclear fact remains: more research is needed onFibromyalgia. Despite not being able toidentify the exact cause of Fibromyalgia,individuals present with similar signs andsymptoms.

Signs and Symptoms

Probably the most frustrating aspect of havingFibromyalgia syndrome, as in EDS, is that you“look healthy.” Compounded by the fact thattest results are “normal,” it is difficult toconvince others that something is wrong withyou. Every X–ray and blood test yourphysician ordered has come back withinnormal limits. You embark down the path ofself–doubt and frustration – is this pain real,or is it all in my head? Why is it so difficult toput a label to the signs and symptoms ofFibromyalgia?

Fibromyalgia is frequently misunderstood andconfusing because the symptoms seen in thissyndrome are also found in other conditionssuch as rheumatoid arthritis and lupus.Women are affected more than men and the

Learning To Manage Fibromyalgia SyndromeDarlene A. Clarke, R.N., M.S.N., Chair, Board of Directors;

President & Founder of the Northeast Ohio Branch of the EDNF.Darlene has Hypermobility Type EDS and Fibromyalgia Syndrome.

Views expressed herein are only those of the authors, and should not be construed to represent the opinions or policies of the Ehlers–Danlos National Foundation and it’s elected officials.

Continued


Ergonomics also plays animportant role at home. It’soften difficult for someonewith Fibromyalgia to push avacuum cleaner, wash walls,paint or prepare meals. Thesetasks require the use ofshoulder muscles to maintainarms in extension at somelevel in front of our body.What generally happens isthat an ache begins in theneck, shoulders and upperback. The ache rapidly turnsinto pain that elevates inintensity as it slowly radiatesup and down the back. Youfeel as if you can’t maintainyour arms in this positionany longer, and you quicklyreturn your arms to yoursides as you wait for the pain

to slowly ebb away. Most, if not all of you,can relate to this all too familiar type of pain.

Emotional Factors

Stress is something that each of us has to dealwith on a daily basis. Unfortunately,emotional stress is a prominent factoraggravating Fibromyalgia. We are faced withstressful situations at home, work, school,driving your car on the highway etc. It isn’tdifficult to identify situations that aggravateyour Fibromyalgia symptoms – that’s the easypart of the equation. The trick is to avoid orattempt to modify any stressful situation.

It is extremely difficult to deal with thosesituations in which any stressor is unrelenting.These types of situations can presentthemselves in the home with family membersor in the workplace with coworkers orsupervisors. In these situations, one must lookat not only the circumstance, but how youreact to the stressor. Ultimately, it comes downto dividing these stressful situations into twocategories: those that you have control overand those you have absolutely no control over.In circumstances that you have no controlover, it is imperative that you learn to alteryour response to those particular situations.Save your energy for those battles that youcan emerge victorious.

Environmental Factors

How many times have you been able topredict the approaching weather withouthaving looked at a weather map? Probably toonumerous to count. You feel like you are ahuman barometer with the ability to predictweather changes before they occur. Most

and are deficient in Stage 4sleep – the deepest stage.1,3,5

It is important to note that asecondary Fibromyalgiasyndrome can occur with anyconnective tissue disease(EDS included) and may notnecessarily be related tosleep disturbances.6

Central Nervous SystemSymptoms

As in other chronic illnesses,mood and mental changescan occur in individuals withFibromyalgia. Manyindividuals feel “blue” or“down,” although only about25% are clinically depressed.In most cases, depressionand/or anxiety tends tofollow the onset ofFibromyalgia symptoms and may be the resultof Fibromyalgia and not the cause of it.3

People with Fibromyalgia may also experiencenumbness and tingling in their hands, arms,face, feet and legs. These symptoms can alsobe found in other disorders and usually requirenumerous tests before the diagnosis ofFibromyalgia is reached by a physician.

Other Problems

Muscular as well as migraine headaches arecommon in Fibromyalgia. Abdominalbloating, pain, alternating diarrhea andconstipation are also commonly seen. Theyresemble irritable bowel syndrome or “spasticcolon” in nature. Similar bladder spasms andirritability results in urinary urgency andfrequency. The skin and circulatory system aresensitive to moisture and temperature changesresulting in temporary changes in skin color.2,3

Clinical Diagnosis

Currently, no definitive laboratory tests existto make the diagnosis of Fibromyalgia. Rather,the diagnosis is made by a physician afterobtaining the individual’s medical history andperforming a complete physical examination.

A hallmark of Fibromyalgia syndrome isreduced pain thresholds at designated tenderpoints, demonstrated upon palpation.2

According to the American College ofRheumatology, the diagnostic criteria forFibromyalgia includes: a). widespread diffusepain that has been present for at least threemonths and b). pain that is present in 11 of the18 bilateral tender point sites (see figure 1)when 4 kg of force is applied by digitalpalpation.1,2,7 Recall your response the first

time your physician palpated these 18 “tenderpoints.” Did you say “ouch,” flinch, make afacial grimace, attempt to withdraw awayfrom your doctor or even jump? These are theusual responses elicited by an individual withFibromyalgia. Frequently, patients are shockedby the level of pain they experience whenthese areas are palpated. Now that you knowhow Fibromyalgia is diagnosed, let’s look atthe common triggering factors ofFibromyalgia.

Common Triggers ofFibromyalgia

Three common factors seem to trigger a flarein Fibromyalgia symptoms, physical factors,emotional factors and environmental factors.Keep in mind that your Fibromyalgia canbecome aggravated by these factors alone orany combination of these factors.

Physical Factors

Several physical factors can aggravate yourFibromyalgia. Infections are one type ofphysical factor that can produce the mostprofound exacerbation of Fibromyalgiasymptoms. The second type of physicalfactors deal with ergonomics. The positionswe maintain our bodies in has a directcorrelation to the pain associated inFibromyalgia. For instance, do you have a jobthat requires you use repetitive movementsall day? Are you required to work in one spotwith your arms elevated above your worksurface? Do you need to remain in oneposition (i.e., standing, sitting or driving) forprolonged amounts time? If you answered“yes” to any of the above questions, you willbe able to relate to the pain that results frommaintaining your muscles in a sustainedisometric position for any length of time.

Low Cervical:bilateral at C5 – C7

Second Rib:bilateral at thesecondcosochondraljunctions

Greatertrochanter:bilateral,posterior to thetrochantericprominence

Knees: bilateralat the medial fatpad proximal tothe joint line

Lateralepicondyle:bilateral, 2 cmdistal to theepicondyles

Gluteal: bilateralupper outerquandrants ofbuttocks inanterior fold ofmuscle

Occiput:bilateral at thesuboccipitalmuscle insertions

Trapezius:bilateral at themidpoint of theupper border

Supraspinatus:bilateral above thescapular spinenear the medialborder

Continued

Figure 1


likely you have found that when thebarometric pressure drops, it is followed byeither rain, cold, snow, and fog – all of whichaggravate your symptoms.

Many individuals with Fibromyalgia reportthat certain types of artificial lighting, colddrafts or irritating noises often result in a flareof their muscle pain. When was the last timethat you were able to enter a pool that wasn’theated? Just a guess, but it was probably manyyears ago. Most individuals with Fibromyalgiado not tolerate swimming in cold or coolwater. We are usually found in the heatedpools that others say are “too hot to swim in”or in hot tubs. The goal is to determine whatfactors aggravate your Fibromyalgia and eithereliminate them if possible or at least modifythem. Now that you know what factors cantrigger your Fibromyalgia, let’s look at how itis treated and managed.

Treatment and Management

Since Fibromyalgia’s definitive cause is notknown, current treatments are focused onrelieving painful symptoms, not necessarilycuring them. Additionally, the treatmentprogram prescribed by your physician will beindividualized to address your specific needs.

Numerous treatments have been employedover the years for Fibromyalgia. No onemethod has been entirely successful, butseveral methods will be prescribed by yourphysician in an attempt to control yoursymptoms. A sense of overwhelming reliefcomes with the validation of your symptomsand a diagnosis. Just knowing the name ofyour condition will not be enough though.Your physician and healthcare team willeducate you and your family aboutFibromyalgia. Specifically, you’ll be informedabout your prognosis, possible causativefactors, the aspects of treatment and specificbody mechanics techniques. This educationwill prove invaluable to you. If you are taughtabout what to expect and how to deal withflare–ups, you will be able to control yourFibromyalgia. The goal of education is tomoderate the effects of Fibromyalgia on yourlife. Only then will Fibromyalgia not becomeyour entire life.

Medications may be prescribed by yourphysician to control pain and improve deepStage 4 sleep. If pain is prominent, yourdoctor may prescribe a low dose of ananalgesic or nonsteroidal anti–inflammatorydrug, although most nonsteroidal anti–inflammatory drugs are marginally beneficialand carry the risk of side–effects thatoutweigh their benefits. Therefore, you will bemost likely instructed to use over the counter

Always practice proper body mechanics andapply ergonomic principles at home, work andat rest. These techniques will prevent injuryand reduce flare–ups of Fibromyalgiasymptoms.

Your doctor may prescribe various physicaltherapy treatments. Possible treatmentsinclude: massage, heat or ice applications,ultrasound or whirlpool therapy andmicrovoltage electrical stimulation. These areall passive physical therapy techniques withvarying results from individual to individual.These treatments are usually prescribed forflare–ups and are employed for short periodsof time.3,8

Taking Control of Fibromyalgia

You can engage in several actions that willhelp you gain control of your Fibromyalgia.First and foremost, listen to your body.Identify those triggers that aggravate yoursymptoms and then avoid or at least minimizethem. Get your stress level under control bypracticing relaxation techniques. Relaxationtechniques are primarily effective for chronicpain and have many benefits. Relaxationtechniques enable you to reduce anxiety, painand stress, reduce muscle tension pain andrelieve the helplessness and depressionassociated with chronic pain. Despite havingchronic pain and fatigue, learn to develop apositive attitude. Remember that if you have aconstant negative attitude, your Fibromyalgiasymptoms will exacerbate. Look for the goodin every situation – it’s there, but you mayneed to look closely.

Eat healthy and avoid fat in your diet. Excessweight is detrimental to your body and canaggravate your symptoms. Eating properlyalso maintains your health and avoids illness.Keep in mind that an illness (i.e., cold, flu,bacterial infection etc.) can be a triggeringfactor for your symptoms.

Educate yourself, family and healthcareproviders about Fibromyalgia syndrome.Remember that knowledge is a powerfulweapon in coping with any chronic illness.Knowledge also helps you to take control ofyour Fibromyalgia and reduce theexacerbation of its symptoms.

Lastly, seek support from others withFibromyalgia. Check with your physician,healthcare institution, and within your localcommunity for a Fibromyalgia support group.It is extremely beneficial to receive supportand understanding from others who have thesame type of problems from Fibromyalgia asyou do. Connecting with a support group also

medications such as acetaminophen, aspirin oribuprofen to relieve pain and reduce stiffness.If you are currently on a nonsteroidal anti–inflammatory drug to help manage your EDS,your physician will likely instruct you to takeacetaminophen, not ibuprofen or aspirin, tocontrol your pain. Narcotics, cortisonederivatives and tranquilizers are avoidedbecause of their ineffectiveness and potentialside–effects.2,3,7,8

To improve Stage 4 sleep, your physician mayprescribe low doses of tricyclicantidepressants (Elavil, Sinequan) or themuscle relaxant cyclobenzaprine (Flexeril).These drugs are structurally similar and theyblock the re–uptake of the neurotransmittersthat regulate deep Stage 4 sleep.3,8 Thesemedications carry the risk of potential side–effects which include: drowsiness, weightgain, dry mouth and constipation to name afew. Do not be discouraged if you do notrespond to the first medication(s) prescribed.Your doctor may need to adjust dosages orchange drugs to achieve an improvement.

Individuals with Fibromyalgia should practicegood sleep hygiene to promote sleep. Bedtimerituals can relax you in preparation of sleep.These bedtime rituals can include: taking awarm bath or shower, reading a novel,watching a relaxing television program orlistening to soothing music which can promotesleep. Attempt to follow a regular sleepschedule and go to bed at the same time eachday. Sleep eight hours nightly if possible. Avoidalcohol, caffeine and tobacco before retiring –they will disturb your sleep. Also abstain fromtaking midday naps.

Exercise is a key element in Fibromyalgiamanagement. Your physician will recommendthat you slowly increase your aerobic fitnesswith structured, low impact activities such asswimming, water aerobics, walking, or ridinga stationary bicycle.2,3,7,8 Research hasindicated that aerobic exercise improves sleep,enhances endorphin release and hasantidepressant effects.2 It is important tocheck with your physician to ensure that theexercise program you have chosen is notcontraindicated in your specific type of EDS.Remember to always stretch your musclesbefore engaging in any aerobic activity.Increase your exercise program gradually toreduce the chance of injury. As you continueto exercise, you’ll notice that you feel better,have more endurance and experience areduction in Fibromyalgia symptoms. It’sworth the possible pain and fatigue feltinitially to achieve these end–results.

Continued


EDNF Branch BylawsCommittee Update

Darlene A. Clarke, R.N., M.S.N.,Chair, Branch Bylaws Committee

Bylaws Committee Members: KimChristensen, Co–President, New York CityBranch; Darlene Clarke, President,Northeast Ohio Branch; Peggy RochaSnuggs, President, Tampa Bay Area Branch;Lynn Sanders, President, MilwaukeeBranch; Maggie Buckley, President, SanFrancisco Bay Area Branch; Shari Gamson,Southern California Branch, LindaNeumann–Potash, Executive Director; &Harold Goldstein, Director, Local BranchOrganization.

The Bylaws Committee completed our draftof standardized Bylaws during our August17th meeting. We met one final time onSeptember 9th to ensure accuracy of ourdraft. We then had the Bylaws reviewedagain by Brian Glick, who is an attorney.Brian ensured that the Bylaws as written,did not jeopardize the tax–exempt status ofthe EDNF and its subsequent Branches.Finally, the Branch Bylaws draft wasreviewed at the September 26th Board ofDirectors meeting. I am pleased toannounce that the Bylaws wereunanimously adopted by the Board. Allchartered Branches will be receiving theircopy of the Bylaws. When a new Branch ischartered, they will receive a copy of theBylaws. More than likely, you will need to

Each of you is personally aware that the costof almost everything continues to escalate.This holds true for the EDNF and itsservices. Therefore, in order to meet thecurrent needs of our members and to ensurethe continued services of the Foundation, theEDNF membership dues will reflect anincrease that will be effective on January 1,1998. The increase will be as follows:

Individual Membership .................... $25.00

Family Membership ......................... $30.00

Canada & Mexico:



International:



The EDNF is now equipped to accept creditcard payment for membership dues. Thiswill be particularly helpful to ourinternational members.

The decision to increase membership dueswas not made lightly. The cost of printing,shipping, and postage to name only a few,have increased dramatically in the pastseveral years. Currently, the membership duesdo not even cover the expense of publishing,shipping and mailing Loose Connections on aquarterly basis to you. Please keep in mindthat membership dues have not beenincreased in 8 years! We realize that somemembers will not have the economicresources to maintain their membership. Ifthis is your case, please notify the ExecutiveDirector in writing and accommodations willbe made. Thank–you in advance for yourunderstanding in this matter.

submit a copy of these Bylaws to theappropriate governmental agency in yourstate when you register as a charitable, not–for–profit organization.

I want to personally commend all of theCommittee members who willingly gave somuch of their time, energy and expertise tothe development of the standardized BranchBylaws. Each member had a uniqueperspective, thereby ensuring that eachBranch could easily adopt the final set ofBylaws. The blending of the skills andtalents of the Committee members enabledus to achieve our goals for the completionand adoption of the Bylaws. This truly was agreat group of individuals to work with onthis project. On behalf of the Board ofDirectors, I would also like to take thisopportunity to extend a special thank–you toBrian Glick. Without his expertise, input andguidance, we would not have been able tocomplete this project as quickly as we did.The Committee was extremely grateful thatBrian was always there when we neededclarification on an article or to answer ourendless questions (both of which wereoften). To the entire Committee and to BrianGlick, I would like to say that we couldn’thave done it without each of you!

— Membership Dues —

helps you and your family to cope withhaving a chronic illness. And who knows,maybe someday you will have the opportunityto offer support to someone else justdiagnosed with Fibromyalgia. I guarantee itwill be one of the most gratifying andfulfilling experiences of your life.

Conclusion

Receiving a diagnosis of Fibromyalgiasyndrome is an important first step inmanaging this condition. It is not the last stepthough! It is imperative that you have a clearunderstanding of Fibromyalgia, its signs andsymptoms, triggering factors and treatments.Learning to effectively cope with thisdisorder is essential to one’s emotional andphysical health. It is only then that you willbe able to manage your Fibromyalgia andprevent it from becoming your whole life.While there isn’t a cure for Fibromyalgia,there are treatments that are effective inmanaging its symptoms. There is life afterfinding out you have Fibromyalgia.Tomorrow will be better and holds thepossibility of a cure!

References

1Fan, P.T., & Blanton, M.E. (1992). Clinicalfeatures and diagnosis of Fibromyalgia.Journal of Musculoskeletal Medicine, 9(4),24–42.

2Wilke, W.S. (1996). Fibromyalgia:Recognizing and addressing the multipleinterrelated factors. Postgraduate Medicine,100(1), 153–170.

3Arthritis Foundation, Inc. (1995)Fibromyalgia Syndrome, 1–12.

4Dunkin, M.A. (1993, September–October).Fibromyalgia: Out of the Closet. ArthritisToday, pp. 24–28.

5Dunkin, M.A. (1997, September–October).Fibromyalgia: Syndrome of the ’90s. ArthritisToday, pp. 41–47.

6Ignatavicius, D.D., Workman, M.L., &Mishler, M.A. (1995). Medical–SurgicalNursing (2nd ed.). Philadelphia: W.B.Saunders Company.

7Goldberg, D.L. (1990) Fibromyalgia andchronic fatigue syndrome: Are they the same?Journal of Musculoskeletal Medicine, 7(5),19–28.

8Sherman, C. (1992) Managing fibromyalgiawith exercise. The Physician and SportsMedicine, 20(10), 166–172.


Many who suffer from chronic pain havebeen thorough a number of differenttreatments. They have tried physical therapy,biofeedback, surgery, medications,counseling, and other treatment modalitieswithout much success. They find that thepain affects virtually every aspect of theireveryday lives: work, home, school, andsocial activities are all controlled by the pain.

If you want to regain control of your life, it isimportant to learn how to cope with chronicpain. Although your pain may never go away,it is possible to reduce pain levels and, moreimportantly improve quality of life. To do so,you may need a multidiscplinary approach tochronic pain. While many of you have triedalmost every available medical interventionwithout great success, sometimes thesetherapies are most effective when performedtogether in a controlled setting. Tosuccessfully regain control of your life, youmust have all the necessary ingredients ofpain management in the right quality. It ispossible to live with chronic pain.

A multidiscplinary pain program can provideyou with the necessary skills, medicalintervention, and direction to effectively copewith chronic pain. The following informationwill tell you how to go about locating a painmanagement program in your area, what tolook for in a well defined pain program, andwhat other issues to consider.

Multidisciplinary PainManagement Units

Make sure you locate a legitimate program.

Hospitals and rehabilitation centers are mostlikely to offer comprehensive treatment thanare “stand alone” programs.

Facilities that offer pain management shouldinclude several specific components listedbelow:

The Commission on Accreditation ofRehabilitation Facilities (telephone: (800)444–8991) can provide you with a listing ofaccredited pain programs in your area (yourhealth insurance may require that the unit beCARF accredited in order for you to receivereimbursement). You can call the AmericanPain Society, a group of health careproviders, at (847) 375-4715 for additionalinformation about pain units in your area.

Choose a good program that isconvenient for you and your family:

Most pain management programs are part ofa hospital or rehabilitation center. Theprogram should be housed in a separate unitdesigned for pain management.

Many pain management programs do notoffer inpatient care. Choosing a programclose to your home will enable you tocommute to the program each day.

Guidelines to Help Select a Pain UnitReprinted with permission

from the American Chronic Pain Association• Do you understand what is required of you

during your stay (length of time you will beon the unit, responsibility to take care ofpersonal needs, etc.)?

• Does the unit provide any type of jobretraining?

• Make sure that, before accepting you, theunit reviews your previous medical recordand gives you a complete physicalevaluation to be sure you can participate inthe program.

• Your personal physician can refer you to theunit, but many programs also accept selfreferral.

• Obtain copies of your recent medicalrecords to prevent duplicate testing.

• Before you enter the unit, check with yourinsurance company to see what type ofbenefits it provides for pain management.

• Try to talk with both present and pastprogram participants to get their feedbackabout their stay on the unit.

Pain management can make a significantdifference in your life; however, you mustrealize that much of what you gain from yourstay will be up to you. Treatment is designedto help you get out of the patient role andback to being a person. The program shouldhelp to restore your ability to function and toenjoy life. It will be up to you to becomeactively involved in the program if youexpect to regain control of your life. Painprograms are difficult, but the benefits canimprove your life–styles!

If you need further information, please callthe American Chronic Pain Association’snational office at (916) 632–0922.

Learning something about the peoplewho run the program:

Try to meet several of the staff members toget a sense of the people you will be dealingwith while on the unit.

The program should have complete medicalstaff trained in pain management techniquesincluding:

Physician (may be a neurologist, psychiatrist,physiatrist, or anesthesiologist but shouldhave expertise in pain management).

Registered Nurse, Psychiatrist or psychologist.

Physical Therapist and Occupational Therapist.

Biofeedback Therapist and Family Counselor.

Vocational Counselor.

Personnel trained in pain managementintervention.

Make sure the program includesmost of the following features:

BiofeedbackGroup Therapy

CounselingOccupational Therapy

Family CounselingAssertiveness Training

TENS UnitsRegional anesthesia (nerve blocks)

Physical Therapy(exercise and body mechanics)

Relaxation Training & Stress ManagementEducational Program Covering

Medications & Other Aspects ofPain & its Management

Aftercare (follow–up supportonce you have left the unit)

Be sure your family can beinvolved in your care:

• Family members should be required to beinvolved in your treatment.

• The program should provide specialeducation sessions for family members.

• Joint counseling for you and your familyshould also be available.

Also consider these additional factors:

• What services will your insurance companyreimburse, and what will you be expected tocover?

• What is the unit’s physical setup (it is in apatient care area or in an area by itself)?

• What is the program’s length of stay?

• Is the program inpatient or outpatient (whengoing through medication detoxification,inpatient is recommended)

• If you choose an out–of–town unit, canyour family be involved in your care?

Editors Note: Since this article wasoriginally published, more informationabout organizations mentioned haschanged or been updated.

American Chronic Pain AssociationP.O. 850Rocklin, CA, 95677

American Pain Society4700 W. Lake AvenueGlenview, IL 60025(Tel) 847/375-4715(Fax) 847/375-4777(E-mail) [email protected](Website) http://www.ampainsoc.org/

The Commission on Accreditation ofRehabilitation Facilities891 E. Grant RoadTucson, AZ 85712(520) 325-1044 Voice/TDDFAX (520) 318-1129(E-mail) [email protected](Website) http://www.carf.org/


Dear Editor:

I have a need to get feedback from others on successes and failureswith repair and reconstructions of ligaments in the knee. I have avery complicated problem with my knee. I have deterioratedcartilage, a torn meniscus, stretched anterior crucial ligament and atorn posterior crucial ligament along with chronic quadricepsweakness due to the tear. I have been advised that there is nosuccessful surgery to date for the posterior cruciate ligament thatwould stabilize my knee, especially given the fact that I have EDS. Iam wearing an excellent brace which does help but is becomingquite confining and aggravating when I am constantly beingstopped by the general public, friend and foe, to talk with me aboutmy knee which can’t simply be explained only to then hear abouttheir knee problems from a skiing accident of the like. The kneebrace is not helping as much as it used to either and I just feel therehas to be something that can be done to help the pain and to stabilizeit with surgery. If there is anyone in the foundation who has had asimilar problem and tried some solutions down the surgery avenue,could you please write in to respond on the outcome, who did yoursurgery, and the method of repair. I really appreciate the wealth ofinformation that is learned from the newsletter and other’s input.

Thanks for your help.

K.K. , St. Louis, MO

Dear Loose Connections,

My name is Laurie and I’m writing to you about my son Joe. He is 2& 1/2 years old, has a head full of blond curls and loves baseball.He is thought to have a type of collagen disorder and although noone can put a name to it several have mentioned Ehlers–Danlossyndrome VII. He has very flexible joints, saggy skin on his faceand arms, normal bruising, normal wound healing and has been in acast or a brace for dislocated hips since he was 3 months old andnow I’ve been told that it is unlikely that any additionalimprovement of his acetabulum will occur. Surgery has beensuggested to improve the size and shape of his acetabulum in orderto promote continued hip growth.

My question is, are there any other ED patients out there that havesimilar stories about hip dislocation and acetabular deformities?Our surgeon has one other experience with E.D. patients. Are thereany special risks? Any precautions to be taken? Are the outcomesgood? Is there a specialist in the U.S. for E.D. patients withorthopaedic problems?

If you have any information that could be helpful, please e–mail meat [email protected] or write to:

Laurie B. Meehan802 Lenlock Dr.Huntsville AL 35802

I’m scared. I want to give my son a chance to have a normal lifewithout braces, but I don’t want to take away his ability to make ahomerun, even if he wobbles in to home plate.

Thank you.

Dear Editor,

In the issue Loose Connections dated August1997 in the letters to the editor section onpage 14, there was a mother asking forhelp for her daughter who has bruiseson her shins and knees. My sonand I have the same problem. Ihave found a product it’scalled DERMABLEND.It’s a cream that comesin all kinds of shades.You can find the shade which matches the color of your skin to cover upthe bruises. During the summer when the color of your skin gets darkerfrom the sun, you can get a little darker shade. Demablend iswaterproof. It is sold at Macy’s or other fine stores at cosmetic counters.Sometimes drugstores carry it also. The cost is about $12.00.

When I was a kid I struggled with the same “ashamed” of my legsproblem. I didn’t want it to show anymore. And you are right, theworld is so hard for anyone who looks different than the “normal”people do. So when I found this product I felt free for the first timein many years. I am now 37 years old and have come to the pointthat I don’t care as much anymore that people stare or that peoplesay something about my legs. But everyday is still a struggle. Nowmy son who is 7 years old has to go through this same problem; thathe cannot do certain activities and that people stare at him becauseof the bruises on his legs. I haven’t applied the Dermablemd on hislegs yet. I will only do this for him if he asks for it. I don’t want himto feel ashamed having those bruises.

I really hope this product will help your daughter to find somefreedom on those hot summer days so she can be a kid again.

Thank you,

Dineke Glasser

Letters To The Editor

Views expressed herein are only those of the authors, and should not be construed to represent theopinions or policies of the Ehlers–Danlos National Foundation and it’s elected officials.

Special thank you to the followingindividuals and organizations for their

fundraising activities on behalf of EDNF:Evening Star Grandmother’s Club Charter #1021, Brooklyn, NY

Executive Call Center, Annual Employee Outing, Manchester, NHSusan Dion, Life Jam ’97, Huntington, MA

Tampa Bay Branch, 2nd Annual Golf Tournament

Special thank you to the followingorganizations for their support with Loose

Connections and the Web Site:Leigh at St. Genesis (Internet Services)Sue at ExchangeNet (Internet Services)

Jeff at Cowgill PrintingJoan and Alan at J. P. Graphics

Gary and Rick at Northern Ohio PrintingJim and Debbie at Premier Impressions


— Memorials and Honorariums —

David and Diane Spechtand Family

Specht Reality, Inc.Paul D. Akins III Auto Sales

Todd and Teresa AlderferArthur and Beverly Altemose

Catherine BalsavageBarnet Bank – South Cape Coral

The Basile CorporationAdam and Pauline Benfield

Berks County BankBerks County Legion LeagueBethlehm and Pennllyn PikesWilliam and Margaret Bickel

Birdsboro American Legion Sr.Babe Ruth Coaches Parents Assoc.

Janet and James BorgmanBoyertown Midget Mite Football

Assoc., Inc.Brumbach Associates, Inc.

Cassel–Miller Real Estate, Inc.Central Montgomery County

Assoc. of Realtors, Inc.Century 21 Harris and Henry

A.L. Coffman & SonsBarbara and James Corum, Jr.

Mary S. CressmanAnita Curtis

James and Regina CusterCustom Cut, Gary MartinLewin and Daryl Deery

Richard and Shannon DelpEdward and Tierra Dobry

Mrs. Thelam DouglasERA Philadelphia Broker Council

Mr. & Mrs. William FillerJohn Gemberling

Ellen and Herbert GieselerGilbertsville Elementary School

Robert and Jean GrimJohn Hagmann

Tammy HoffmanInsurance Innovators, Inc.Christine and John JonesRobert and Joyce Jones

Mildred S. KelleyBrian Kelly

Mary and Frank KolarzEmilie S. Kurtz

Ronald and Phyliis LeidyPatricia Leinbach

Kerry and Lesley LeisterGeorge I. Lent

Gregory and Gail LevengoodRaymond and Janet Leyfret, Jr.

Joan A. Lucidi

In Memory ofTrevor Mursch

Mr. & Mrs. Curtis Liles, IIIDonalyn Hernandez

In Memory ofEric J. Espinosa

Dr. Susan Ristow

Wishing a SpeedyRecovery to

Dr. Michael GoodmanJoan and Herbert MajowerSelma and Samuel Gordon

In Memory ofMy Family Members who

had EDS Type IV;Judith Simmons Dion,

Lisa Dion Pickford,Michelle Dion, andRoger Pickford, Jr.

Susan E. Dion

In Memory ofRobert Berliner

Shirley Burkom

In Memory ofAnna Schneider

Josef F. SchneiderMadeleine Got

Rodney and Marlene McGowanWolf and Ute Schneider

Mona BrownGary and Veronica BrownLouise and A.G. Hagen

Catherine Girden

In Honor ofRona MajowerMuriel Goodfriend

In Honor ofDarlene Clarke

who works tirelesslyfor the FoundationThe Center for Oral andMaxillofacial Surgery

Margaret ClarkeMichael B. and Mary Ellen Feigi

Michael S. and Gloria FeigiGreg and Shari McDonaldMr. & Mrs. Cosmo Midea

Dr. Thomas P. MurphyRon, Robbin and Rachel Ricci

"LIFE"by David Daniel BowenHis name tells how it is for him

He wonders,whether he should go onBut he feels so strong on

reaching his goal

There are many thingsthat happen to him

but he just pushes onThe goal is likea shining light,

that is blinding himThe only way of

stopping the light isto reach the goal

Something happens and he thinksabout stoppingbut the way is

now drawn for himAnd he knows aftergetting through this

has helped him see the lighteven brighter now

The way he feels now he can do

"Anything"

June 7th, 1996 David died July 8th,1996

In Loving –Memory ofDavid Daniel Bowen III

"Our Hero"You were "Courage & Strength"

You were exceptional.......David, Catherine &

Melissa Bowen

In Loving Memory ofJordan David Specht

"Our Hero"You were "Courage & Strength"

You were exceptional.......David, Catherine &

Melissa Bowen

In Loving Memory of aVery Special Mother,

Lucile HurtubiseAnne Hurtubise

Walter and Jean MacFarland IIIWilliam and Brenda MarionEdward and Shirley MartinMark and Loreen Martin

Terry and Damon MeadowsDavid and Donna Minner

Victoria MoriciRobert and Ingrid Moses

Lois A. MotkoDorothy L. Moyer

Patricia MoyerNational Penn Bancshares, Inc.

Sharon O’Melia HowardMichael and Gail Ondo

Optimist Club of BoyertownOwl’s Sports Club

Jesse and Barbara PainterPanos Papantoniou

Doris ParrishVincent and Laura Pettine

Timothy and Stephanie PhillipsPhoenixville Federal Savings

Professional Pharmacy &Convalescent Products, Inc.

The Prudential Select PropertiesThe Realty Group, Inc.Oliver and Shirley ReedFrances and Emil Reh

Melvin and Shirley ReitnourSue Richard

Gerald and Elaine RichardsJohn and Nancy Rinker, Jr

John and Susan RuthkowskiJames and Paula Scheffey

Mrs. Barbara Schreiber and FamilyJohn Sheridan Jr.

Thomas and Trudy SiakFancis and Anthony Shreves

Donaled SmaleMark and Lisa Smith

Richard and Eloise SmithRoyal Spatz

Donald and Sheila SpechtJohn StetlerBev Tornetta

Tornetta Realty CorpWalace and Mary Van DykeJoseph and Linda Voytilla

Louise WagnerNorma and Edgar Walls, Jr.

Vicki WaycockWayne and Kathleen WeidnerWilliam and Patricia Wilkins

Christopher and Carlyn YerkesNorman and Betty YocomLarry and Sandra Zentz

In Memory of Jordan David Specht


FranceAssociation Francaise des Syndromes d’Ehlers–DanlosMarie Helene Boucand, Director12 Alle des Lilas83400 HyeresFranceTelephone/Fax: 04–94–23–36–40

GermanyDeutsche Ehlers–Danlos Initiative e. V.Brigit MartinGrafensteinstr #3696052 BambergGermanyTelephone: 95131289

ItalyAssociazone Italiana per la Sindrome di Ehlers–Danlos (A.I.S.E.D.)Dr. Kathryn DyneDipartimento di BiochimicaVia Taramelli 3B27100 PaviaItalyTelephone: +39 382 507231/222Fax: + 39 382 423108E–Mail: [email protected]

New ZealandNew Zealand Ehlers–Danlos Syndrome SupportGroupJanette Longshaw46 Waiohiki Rd. RD3Napier Hawkes BayNew ZealandTelephone: 06 844 3115

NorwayEhlers–Danlos Syndrome Support Group NorwayGrete Mikalsen, SecretaryAgm Boltsvei 520664 Oslo, NorwayTelephone: 47 22 53 15 32E–Mail: [email protected]

SwedenEhlers–Danlos –Syndrom RiksforbundBritta BerglundBjorkvagen 77S–147 33 Tumba, SwedenTelephone: 46 8 530 394 33E–Mail: [email protected] [email protected]

United KingdomEhlers–Danlos Support GroupMrs. Valerie Burrows, Founder1 Chandler CloseRichmond, North Yorks DL 10 5QQ UKTelephone/Fax: +44 01748 823867E–Mail: [email protected] Site: http://ourworld.compuserve.com/homepages/eds_uk/

United StatesEhlers–Danlos National FoundationLinda Neumann–Potash RN, MN,Executive Director6399 Wilshire Blvd. Suite 510Los Angeles, CA 90048(213) 651–3038 — FAX: (213) 651–1366E–Mail: [email protected] Site: http://www.ednf.org

The InternationalEhlers–Danlos

Syndrome Network(I.E.D.S.N.)

Founded in June 1997. The purpose of thisnetwork is to promote cooperation betweenEhlers–Danlos Syndrome Organizationsworldwide. All organizations represented inthe Network are autonomous and theNetwork will offer the opportunity to workcollectively when there is a need.

The initial meeting of the I.E.D.S.N. was heldin June 1997 in Villefranche–Sur–Mer,France. Delegates attended from Belgium,Denmark, France, Germany, Italy, Norway,Sweden, United Kingdom, and the UnitedStates. The Foundation of this organizationwas established during this first historicmeeting. The focus will initially consist ofsharing resources between participatinggroups. A long term goal will be the supportof EDS research worldwide. The FirstInternational EDS Conference is scheduled forthe summer of 2001. Listed below are theCharter Member Organizations and thecontact person for each organization:

AustraliaAustralian EDS Support GroupVicki Tate, CoordinatorUpper Orara RoadKarangi Via2450 Coffs Harbour, N.S.W.AustraliaTelephone: 066–538115

BelgiumBelgium Marfan/EDS Support GroupClaudine WaelputAntwerpsesteenweg 783B–9040 St. AmandsbergBelgiumTelephone: 9 228 61 16

CanadaCanadian Ehlers–Danlos Association (CEDA)Jill Douglas–Hand, R.N.President and Founder183 Charlton AveThornhill OntarioCanada L4J 6E9Telephone: (905) 761–7552Fax: 905) 761–7567E–Mail: [email protected] Site: http://www.interlog.com/~ceda

DenmarkThe Danish Ehlers–Danlos SocietyBetina Winther Boserup, ChairpersonEskildsvej 122990 NivaaDenmarkTelephone/Fax: +45 49149632

Donations10/96 through 9/97

Patron Donors($ 250 – $ 499)

Judith and Marvin BellinBarbara BergfelderWilliam BuckleyLorraine EarnhartMrs. Meg Harmon

Pam and Dick MalenfantSally Pinkerstaff, M.D.

The Rup FamilyHarley Rutstein

Benefactor($500 – $999)Kathleen Barger

Mary Bryant and FamilyBrent & Collen Butcher

Grandmother’s Club # 1021Kendall Door & Hardware, Inc &

Kendall CorporationStephen and Charlene NashErika and Tibor Neumann

Silver Benefactor($ 1,000 – $ 2,499)

Dr. & Mrs. Herbert BrizelMr. & Mrs. Ed Brutman

Marian JandeckaMr. and Mrs. John Richardson

Glen and Susan Schafer

Platinum Benefactor($ 2,500 – $4,999)

Anonymous

Gold Benefactor($ 5,000 or more)Harold Goldstein

Susan Stephenson, Ph.D.

1998 LearningConference Update

Darlene A. Clarke,R.N., M.S.N.,

Chair, Board of Directors

Under the direction of Peggy RochaSnuggs, the 8th National LearningConference is taking shape. As youprobably already know, the conference willbe held in Tampa, Florida. The date hasbeen narrowed down to either the last weekin July or the first week in August. Peggyhas been busy securing medical experts toaddress the participants regarding variousaspects of EDS. She is also selecting hotelaccommodations for conferenceparticipants. We hope to see all of you inTampa next summer! Look for moredetailed information on the conference inthe next edition of Loose Connections.

1997, Volume 12, Number 3, Number Payment

“Managed Care – A Basic Map For Navigating Your Insurance” _______ _______

1997, Volume 12, Number 2,“The Role of the Rheumatologists inEhlers–Danlos Syndrome” _______ _______

1997, Volume 12, Number 1,“Ergonomics: Recognition and Evaluationof Risk Factors and Potential Stressors (Part 3)” _______ _______



1996, Volume 11, Number 2,“The Medical Partnership: How to Workas a Team With Your Doctor” _______ _______

1995, Volume 10, Number 1,“Mandibular Joint, Orthodontic andDental Findings In EDS” _______ _______

1994, Volume 9, Number 3, “Genetic Information and Health Insurance” _______ _______

1994, Volume 9, Number 2,“Heritable Disorders of Connective Tissue andDisability and Chronic Disease In Childhood” _______ _______

1994, Volume 9, Number 1,“Official Launch of the Ehlers–DanlosSyndrome Database Manager” _______ _______

1993, Volume 8, Number 4, Number Payment

“Dental Manifestations and Considerations InTreating Patients With Ehlers–Danlos Syndrome”_______ _______

1993, Volume 8, Number 3,“What’s Wrong WithThis Patient?” _______ _______

1993, Volume 8, Number 2,“Gastrointestinal Considerations in PeopleSuffering From Ehlers–Danlos Syndrome” _______ _______

1993, Volume 8, Number 1,“Chronic Pain ManagementTreatment Facilities” _______ _______

1992, Volume 7, Number 4,“Perspectives on Pain Historyand Current Status” _______ _______

1992, Volume 7, Number 3,“Use of Mesh to PreventRecurrence of Hernias” _______ _______

1991, Volume 6, Number 4,“Ehlers–Danlos Syndrome Type VI” _______ _______

1991, Volume 6, Number 3,“Ehlers–Danlos SyndromeType III and Pregnancy” _______ _______

1990, Volume 6, Number 1,“Passport to Seattle” _______ _______

1990, Volume 5, Number 4,“The Emergency Room andEhlers–Danlos Syndrome” _______ _______

Ehlers–Danlos National Foundation— Back Issues —

6399 Wilshire Blvd. Suite 510Los Angeles, CA 90048

(213) 651–3038

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Ehlers–Danlos National Foundation— Membership Form —

6399 Wilshire Blvd. Suite 510Los Angeles, CA 90048

(213) 651–3038

PLEASE PRINT and send a change of address, if applicable

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Are you or a family member diagnosed with Ehlers–Danlos Syndrome? .......................... Yes: ❏ No: ❏ Who: _________________________

If yes, do you know what type?: ___________________________

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International:



Donor Program❏ Corporate Membership ....................................................... $ 50.00

❏ Patron Donor ...................................................................... $250.00

❏ Benefactor Donor ............................................................ $500.00+

❏ Corporate Sponsorship ..................................................... $____.__

❏ Additional Donation ......................................................... $____.__

Please take a few minutes to list problems or ideas that you would like to see covered in future issues of “Loose Connections”. The Ehlers—

Danlos National Foundation was created to help everyone and your ideas and thoughts are very important to us. _______________________

__________________________________________________________________________________________________________________

__________________________________________________________________________________________________________________If you are interested in corresponding with other families, please sign the release below. Please note that only your name, address and phonenumber will be released and ONLY to other members. All other information you provide to the foundation will remain strictly confidential.You are not obligated to sign this release.

❏ Check here if you’d like the name and address of three other members in your area to communicate with.

❏ Check here if you want to be notified about a support group in your area (Your name will be forwarded to the nearest branch).

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The EDNF is now equipped to accept credit card payment (Discover, VISA & Mastercard Only).This will be particularly helpful to our international members.

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The EDNF does not lend, sell or trade its membership list to any individual or organization.The EDNF is a not for prof it corporation. Your donation is tax deduct ible and is sincerely appreciated.


The Ehlers–Danlos National Foundation(EDNF) was created in 1985 in an effort toprovide emotional support and updatedinformation to those who suffer from thedisorder. In addition, EDNF serves as a vitalinformational link to and from the medicalcommunity. Loose Connections, the officialcommunications link of EDNF, is publishedon a quarterly basis. Subscriptioninformation may be obtained by writing theFoundation.

Ehlers–Danlos Syndrome (EDS) is a groupof heritable disorders of the connective tissueoften characterized by hyperextensible skin,hypermobile joints, easy bruisability of theskin, and a bleeding diathesis. EDS is namedfor two physicians (Ehlers and Danlos) whodescribed forms of the condition in the early1900s. At least six forms of Ehlers–DanlosSyndrome have been described, which are notgradations in severity, but represent distinctdisorders which “run true” in a family.

Ehlers–Danlos National Foundation6399 Wilshire Blvd. Suite 510Los Angeles, CA 90048ADDRESS CORRECTION REQUESTED

Ehlers–Danlos National Foundation6399 Wilshire Blvd. Suite 510Los Angeles, CA 90048ADDRESS CORRECTION REQUESTED

Loose ConnectionsLoose Connections

6399 Wilshire Blvd. Suite 510Los Angeles, California 90048

Phone: (213) 651–3038 — FAX: (213) 651–1366Web Site: www.ednf.org — E–Mail: [email protected]

Documents

Loose Connections (November 1997)