Fall 2013

In this Issue:

• Rare But Not Alone… The New Face of Rare Disorders in Canada

• Dr. Senécal and Dr. Safarti Make a Breakthrough in Scleroderma Research

• Pulmonary Hypertension… The Burden of Illness Survey

• Annual Pulmonary Hypertension Screening Recommended for Systemic Sclerosis

• My Miracle Journey

• Nicole Edwards Shares Her Story with a National Audience

• 2nd Annual Scleroderma Ride for Research

• Creamy Pumpkin-Apple Bisque: Healthy Food – Easy to Prepare

• Scleroderma Tea Party Fundraiser – Rave Reviews

•ATeatimeDiscussion: Does Drinking Green Tea Help Improve Scleroderma?

•SAVETHEDATE! 15th Annual Scleroderma Conference Sept. 19&20, 2014 Winnipeg, Manitoba

•MakingaDifference

Over 300 people (patients, physicians, allied health professionals and researchers) participated in this year’s Scleroderma National Congress. Guest

presenters (to name just a few), included:

• Dr. Fredrick Wigley, MD, Professor of Medicine, As-sociate Director, Division of Rheumatology, and the Director of the John Hopkins Scleroderma Center. Dr. Wigley, along with Dr. Baron, Dr. Khanna, Dr. Mayes and Dr. Baron spoke about, “Hot Topics in Scleroder-ma Research – A Review of World Wide Research.”

• Dr. Janet Pope, MD, MPH, FRCP, Professor of Medicine in the division of Rheumatology and Epide-miology and Biostatics at Western University, London, Ontario. Dr. Pope spoke about, “Pulmonary Arterial Hypertension.”

• Dr. James Partridge OBE, DSc(Hon), FRCSEd(Hon), MSc, MA, Founder & Chief Executive of Changing Faces, the leading UK charity supporting and repre-senting people with disfigurements. Dr. Partridge was

the keynote speaker for the event. He spoke about, “Changing Faces.”

• Dr. Maureen Mayes, MD, MPH, Professor of Medi-cine in the Division of Rheumatology at the University of Texas-Houston Medical School. Dr. Mayes spoke about “Helping you understand how to become an ac-tive, educated participant in your own health care.”

• Dr. Dinesh Khanna, MD, MSc, Associate Professor of Medicine and Director, University of Michigan Scleroder-ma Program. Dr. Khanna spoke about “Eating for health and managing specific scleroderma related GI issues.”

• Dr. Murray Baron, MD, Professor of Medicine at McGill University and Division Chief of Rheumatology at the Jewish General Hospital who spoke about “For Men Only” & “Scleroderma Renal Crisis”.

To review copies of presentations, please visit: www.sclerodermacanada.ca or www.sclerodermaontario.ca

Highlights from the Scleroderma Society of Canada’s National Congress, 2013…. Caring for the whole patient

NewsletterEditor:SusanDocherty-Skippen,BSc,BEd(ADED),MEd(c)•NewsletterLayout&Designby:JohnCacoGraphicDesign•jcaco@bell.net

The SclerodermaConnectionScleroderma Society of Ontario

Hamilton, Ontario

Scleroderma Society of Ontario Mission StatementThe Scleroderma Society of Ontario is committed to promoting public awareness,

supporting those affected by Scleroderma and funding research to find a cure.

We are all used to the idea of fighting disease. Too often, though, a big part of that fight goes unnoticed.  While our main focus is on the disease itself and its observable symptoms, there’s another fight going on—a fight within the

patient and between the patient and a world that seems to change at the moment of diagnosis. That kind of fight is even more challenging when it involves a rare disease.

There is a period of tremendous vulnerability that accompanies a rare disease diagnosis. Medical experts are few, research is scattered and the treat-ments seem underwhelming.  Whether you realize it or not, your diagno-sis starts a process that will turn you into the expert. Becoming your own best advocate is essential when dealing with a rare disease. You often have to educate even well-informed health care professionals about the specifics of your illness.

This is rarely truer than when you are diagnosed with scleroderma, a disease even harder to explain than pronounce.  In simple terms, it is a connective tissue disorder that results in excessive scar tissue (collagen) accumulating in the skin. At its mildest, it results in a hardening of the skin. At its worst, the scarring attacks internal organs and blood ves-sels.  Scleroderma can be mildly disfiguring, severely disfiguring, disabling or even fatal.

Facing the new normalThese are the things you learn probably within minutes of the diagnosis, just before the grieving process begins as you start to face your new normal.  Some people withdraw, others try to pretend nothing has changed. Eventually, sometimes painfully, we each find our own ways to cope. A big milestone in that process is how we deal with facial disfigurement. You either learn to handle the insensitivity or curiosity of strangers or you isolate yourself. Coping with issues like these takes skill and developing any skill takes guidance and work.

Thanks to funding from the Canadian Institutes of Health Research (CIHR), the Sclero-derma Patient-centered Intervention Network (SPIN) is building a tool kit of scientifi-cally validated interventions to assist people living with scleroderma as they work to develop the coping skills demanded by this terrible disease. Strategies for dealing with body image, hand function and emotional distress, along with a self-management pro-gram will be tremendous resources for our community. 

A big milestone in that process is how we deal with facial disfigurement. You either learn to handle the insensitivity or curiosity of strangers or you isolate yourself.

Access to the right toolsCollaborating with organizations like Changing Faces and the Centre for Appearance Re-search (both in the United Kingdom), the SPIN investigators are leading the way in devel-oping these internet-based tools and our hope is that this will become the model for deliv-ering desperately needed assistance within the rare disease community.  Low-cost, easily accessible tools like this are absolutely vital to helping everyone affected by a rare disease.

Fall 2013IN THE NEWS

TheNewFaceofRareDisordersinCanadaBy Maureen Sauvé, Hamilton Ontario, Canada

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Rare But Not Alone…

Maureen Sauvé, President of the Scleroderma Society of Canada and the Scleroderma Society of Ontario

“Thereisaperiodoftremendousvulnerabilitythat accompanies a rare disease diagnosis. Medical experts are few, research is scattered and the treatments seem underwhelming.”

Scleroderma Society of Canada

Article Originally Published in: National Post. (Oct. 19th, 2013) Retrieved from: http://ca.mediaplanet.com/rarediseases/rare-but-not-alone

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Fall 2013

With  each  donation  received our  ability  to  fund re-search and foster that hope grows stronger. Thanks to the continued support of donors from Sclérodermie

Québec, the Scleroderma Society of Ontario, the Scleroderma Society of Canada and the courage of our patients, promising new research conducted by the team of Dr. Jean-Luc Senécal, MD, Professor of Medicine and Scleroderma Research Chair at the University of Montreal and Dr. Marika Sarfati, MD, PhD, Professor of Medicine at the University of Montreal has been championed.

Until now, none of the current animal models used in sclero-derma research truly reproduce human systemic sclerosis. The objective for Drs. Senécal and Sarfati’s team was to immuno-logically induce scleroderma in mice in order to better study and understand the pathogenesis of the disease and evaluate targeted therapies for treatment. Drs. Senécal and Sarfati’s team has made critical steps toward making the development of a novel, immune-mediated model of systemic sclerosis a re-ality. A first group of mice has been successfully induced with an experimental systemic sclerosis which recapitulates the four cardinal features of scleroderma in humans: Vasculopathy,Fibrosis,Inflammation,Autoimmunity These results were selected for presentation in Boston in Au-gust 2013 at the 13th International Workshop on Scleroderma Research, a world-wide advanced scleroderma research event.

Feedback from Drs. Senécal and Sarfati’s presentation were extremely positive.

Sclérodermie Québec, the Scleroderma Society of Ontario, and the Scleroderma Society of Canada would like to thank all our donors and sponsors who make it possible for us to support the tremendous work of Drs. Senécal and Sarfati and all of our other researchers. Their work brings hope for a future that stops “treating the symptoms” and leads to a cure.

Dr. Senécal and Dr. Safarti Make a Breakthrough in Scleroderma ResearchToday,Sclerodermahasnocure.“Research is our hope.” Montreal, Quebec, Canada

CaNada RESEaRCH UpdaTE

Sclérodermie Québec

Scleroderma Society of Ontario

Scleroderma Society of Canada

“This is the first demonstration…thatresults in SSC-like disease in mice.”

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Fall 2103

This survey is our opportunity to create a better life for future PH patients. We’re excited to announce Canada’s first burden of illness survey of PH patients and caregiv-

ers. The goal of the survey is to help us better understand the day-to-day issues facing Canadian PH patients and caregivers so that we can better serve your needs. In addition, the survey will be a vital tool in raising awareness of the disease and its impact, as well as supporting government advocacy efforts. 

Making an impact couldn’t be easier. The questionnaire was de-veloped by a voluntary committee of doctors, nurses, caregivers and patients. The survey is easy to complete online: it just takes 20-30 minutes.

Why we need you. For our survey to be successful, we need to hear the stories of as many PH-affected Canadians as possible. To reach those individuals, we need you. As leaders of your local communities, you have the power to reach people in the corners of our country that PHA Canada as an organization does not. Because you play a prominent role as a leader in your own PH community, we’d like to ask for your help in dispersing this sur-

vey far and wide. This is the link:  www.phacanada.ca/en/get-involved/boi-survey

Remember: the stories of every Canadian are incredibly valu-able to us, and we need your help to collect them all. Thank you for helping us to make the survey a success!

TheBurdenofIllnessSurveyishere...WeNeedYourHelp!By:  The Pulmonary Hypertension Association of Canada

CONNECTING CaNadIaNS

Social Networking and Scleroderma

Connect with us online for the most current informa-tion on upcoming events, breakthrough discoveries in scleroderma research and an opportunity to connect with scleroderma patients from Canada and around the world!

“Like” us on Facebook at https://www.facebook.com/SSCanada 

Follow us on Twitter: @SclerodermaCAN

Have an upcoming fundraising or awareness event you’d like us to promote on social media? Email: info@scleroderma.ca with the details and we’ll be happy to share the news!”

• We are looking for everyday photos of patients, friends and family in support of Scleroderma Awareness for inclusion in our newsletter.

• Photos should include a brief caption - with the names of the people appearing in the photo, and what the photo is about (i.e. event, activity – or just having fun!)

• E-mail photos to: augustine.norma@gmail.com

• Upload photos on Facebook at: https://www.facebook.com/events

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Connnecting Canadians

Saturday,April5,2014•OasisConventionCenter,Mississauga,ON$75.00 per personDinner, Silent Auction, & EntertainmentFor more information, contact:JenniferBothelo,tel:416-828-4647•MaryRealejo,tel:905-824-4769

Friday,January17,2014•QuiltShowSclerodermaFundraiserDemonstration of quilting techniques at the Georgian Bay Metis Office, Midland, ON

UcomingMississaugaGala!

“Join” Jeanette Brunelle and her daughter Lynn on their jour-ney to Disneyland in California. They will be participating in the Tinkerbelle Half Marathon Weekend in an effort to raise awareness and funds for scleroderma.

To learn more and make a donation on Lynn’s event page on Facebook at : www.facebook.com/events/681865175158121/

TheDynamicDuoareatitAgainthisYear!!

REGIONaL NEWS

Scleroderma Societyof Ontario (SSO)

Two SSO Charity Golf Tournaments were held this summer. The first event (organized by Jason Worron and Mike Rice) took place on September 14, 2013 at the

Flamborough Hills Golf & Country Club, Hamilton.

The second event (organized by Krisstina Davis) took place on September 21, 2013 at the Meadows Golf and Country Club, Ottawa.

Both events were successful in raising over $30,000.00 towards Scleroderma research and patient care.

SSOCharityGolfTournamentswithDinner and Silent Auction:RaisingAwareness&ResearchFundswhilehavingFun!!

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Fall 2013REGIONaL NEWS

100,000 Friends Challenge toBeatScleroderma!!Sclérodermie Québec has launched a bold challenge:

to gather 100,000 friends to help raise awareness for scleroderma and to find a cure.

This large scale fundraising initiative is anticipated to be one of Sclérodermie Québec’s largest promotional events ever!

To learn more about this exciting event, a French language video by Gaétan Baril, Director of Sclérodermie Québec has been posted at: www.sclerodermie.ca

To participate in this challenge and become a donor friend, visit the www.sclerodermie.ca and click on the link, “Take the challenge and make a donation”.

Note: For those who do not read French, the Sclérodermie Québec website can be translated into English by typing “Sclérodermie.ca” in the Google Search Engine, then press “Translate”

GaétanBaril,Director of Sclérodermie Québec

Chocó-Champagne FundraiserNovember21,2013–OldQuébec

We are pleased to invite you to our Choco-Champagne fundraiser to be held November 21, 2013 at 6:00 p.m.,

at the Espaces Dalhousie Cruise Terminal in the Old Port of Quebec.

The evening under the theme “Choco-Cham-pagne” –gourmet tasting and glamour will offer our guests to have fun, meet other people and support our cause.

To learn more about this event and how you might support it, please visit: www.sclerodermie.ca

Sclérodermie Québec

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Fall 2013REGIONaL NEWS

The second annual Scleroderma Ride for Research sur-passed the success of last year’s event; thanks to you for your donations, the participants for their grit and

the volunteers for their thoughtfulness. 

With everyone’s help, of passing along our email to others, more people are becoming aware of Scleroderma and the varied challenges of those that live with the disease.  Last year’s fund raising was fantastic (setting a high bar for this year) and this year the support has grown so that the total to date has crept over $13,000.  This contribution will go a long way, when combined with other SABC fund raising, to fund the proof-of-concept study for genome research.

The wet morning did not discourage our participants, but we were definitely thinking about them as we set up in the rain.  The showers let up just after 10 AM, allowing us to get the group photo and get started on the adventure in relative dryness.  This year we had a group of 9 walk various routes through Stanley Park, a convoy of 17 riders circumnavigat-ed the Park on the sea wall and a squad of 10 took to the streets and bike routes of Vancouver.  The diversity helped to

spread the exposure of blue SABC shirts across town.  The weather cooperated for most, except those that were on the longer ride that got caught as the rain began to increase.

Under the cover of the Ceperley Park pavilion participants and volunteers gathered to enjoy a pot luck lunch and share stories of the day’s adventure.  There was also the opportu-nity for family and friends to learn about the personal chal-lenges of those living with Scleroderma on a daily basis.

Thank you all for being part of another special day with us.  From the increased numbers, it is obvious that your efforts are helping us to get the word out and expanding the aware-ness of scleroderma.  Who is in for June next year, during Scleroderma month?  Save your t-shirts for next year as the sea of blue continues to grow, spreading awareness across the city. We are personally overwhelmed by the individual support of each of you. As I made my announcements at the end of the ride, I was emotionally taken aback as I looked into the faces of those that were there with me; supporting me and my personal efforts to raise the awareness of this disease.  It is not all about me!!!

2nd Annual Scleroderma Ride for Research By: Rosanne Queen: Vancouver, British Columbia, Canada

The caring people that braved the elements in support of the Scleroderma Ride for Research

Scleroderma Association ofBritishColumbia

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Fall 2013

A ccording to new recommendations from an interna-tional panel of experts that includes a top U-M re-searcher, all patients with systemic sclerosis (SSc) and

connective tissue diseases (CTD) should be screened for pul-monary arterial hypertension (PAH). The recommendations were published in the September issue of the journal Arthritis & Rheumatism. The recommendations, part of a larger effort to improve patient outcomes by diagnosing earlier, identify spe-cific tests to be performed in screening these patients for PAH.

PAH is a rare, chronic and progressive lung disease, often dif-ficult to diagnose. PAH affects up to 15 percent of those with CTD and is the leading cause of mortality among them. SSc, or scleroderma, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. Both are complicated conditions.

“These recommendations are the first to provide such specific guidelines that are evidence-driven and consensus-based,” says co-principal investigator, Dinesh Khanna, M.D., M.S., the Mar-vin and Betty Danto Research Professor of Internal Medicine and director of the U-M Scleroderma Program. “Earlier rec-ommendations that were developed as part of larger efforts in PAH did not provide detailed recommendations for patients with CTD-PAH. Hence, our efforts to develop these recommenda-tions for screening and early detection of CTD-associated PAH.”

The article “Recommendations for Screening and Detection of Connective-Tissue Disease Associated Pulmonary Arterial Hy-pertension,” was the result of a literature review and consen-sus process by CTD and PAH experts from the United States,

Canada and the European Union. The panel was convened by the Pulmonary Hypertension Association (PHA) and the Scleroder-ma Foundation, Inc. The panel recommends the following initial screening evaluation of CTD patients:

1. Pulmonary function test (PFT) including diffusion capacity carbon monoxide (DLCO)

2. Transthoracic echocardiogram (TTE)

3. N-terminal pro b-type natriuretic peptide (NT-Pro BNP)

4. Annual TTE and PFT in SSc and spectrum disorders and for the full screening panel to be performed as soon as any new signs or symptoms are present.

Annual Pulmonary Hypertension Screening Recommended for Systemic SclerosisBy: Mitchell Zoller, Internal Medicine News Digital Network: Madrid, Spain

paTIENT EdUCaTION

Dr.DineshKhannadescribingthepanel’sscreeningrecommendationsforpersonswithSScand/orCTD

Forfurtherinformation,readthefullstoryattheSclerodermaFoundationwebsite:www.scleroderma.org/site/News2?page=NewsArticle&id=9233orWatch a three and a half minute video of Dr. Dinesh Khanna describing the panel’s screening recommendations for persons with SSC and/or CTD: www.internalmedicinenews.com/single-view/annual-pulmonary-hypertension-screening-recommend-ed-for-systemic-sclerosis/cc281b4c3236534dc2a1fb656a0893ea.html

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Fall 2013paTIENT EdUCaTION

Ascientific review article issued by the Centre for Rheuma-tology and Connective Tissue Disease, University College London Medical School, has suggested that the natu-

ral occurring phenol antioxidants found in green tea extracts, (-)-epigallocatechin-3-gallate(EGCG) in particular, may serve as a therapeutic agent in the reduction of bodily oxidative stress in persons with Scleroderma.

Unlike black and oolong teas, green tea (also known as Camellia sinesis) is made from unfermented leaves. These leaves contain a high concentration of polyphenols - which act as antioxidants. Antioxidants are molecules that neutralize free radicals. Free radicals are substances that damage the body’s cellular tissue.

In scleroderma, one of the earliest and most significant regula-tors of disease activity is believed to be oxidative stress (tissue damage in the body caused by the accumulation of free radicals). In persons with scleroderma, there appears to be a disruption in the breakdown of the free radical NO (nitric oxide), - result-ing in higher body concentrations of NO than persons without scleroderma. Although the exact process by which NO oxidation influences scleroderma disease activity is unknown, research suggests that NO can dramatically impact the early process of small blood vessel injury, and possibly the subsequent cellular response that leads to fibrosis of the skin and internal organs. Natural antioxidants, such as polyphenols and EGCG from green tea extracts, have been shown to neutralize the free radical NO and reduce oxidative stress. Further investigations are being considered to study the mechanism by which the polyphenols in green tea work to be an effective inhibitor of oxidative- stress-induced cellular damage.

According to the University of Maryland Medical Center, the consumption of green tea has been proven beneficial in animal and human studies in the prevention of a variety of health condi-tions (including cancers and autoimmune diseases such as in-flammatory bowel disease and diabetes. The use of green tea without proper medical recommendation, however is cautioned.

The use of green tea, like other herbs, contains substances that may cause side effects and/or interactions with other herbs and medications. For this purpose, it is important that all herbs be taken with caution, in consultation with a qualified health care professional.

ATeatimeDiscussion:

DoesDrinkingGreenTeaHelp Improve Scleroderma?By: Susan Docherty-Skippen: Hamilton, Ontario, Canada

References:Dooley A., Bruckdorfer R., & Abraham D. (2012) Modulation of Fibrosis in Systemic Sclerosis by Nitric Oxide and Antioxidants. Cardiology Research and Practice. Vol. 2012, Article ID 521958, Retrieved 19Oct2013 from: http://dx.doi.org/10.1155/2012/521958.“Green Tea”, University of Maryland Medical Center. Retrieved 19Oct2013 from: http://umm.edu/health/medical/altmed/herb/green-tea.

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Cholesterol(chol.)&TransFat(TF)free. TF raises bad LDL chol. and lowers good HDL chol.

Lowinsaturatedfat(SF).SF raises bad LDL chol. in blood which leads to increased risk ofcoronary heart disease.

High in omega-3 fat. Helps protect against heart attacks and strokes.

High in monounsaturated fat. Helps reduce risk of coronary heart disease by lowering bad LDL chol. in the blood and helps to control blood glucose.

A good source of Omega-6 fat. Important for the brain.

HealthBenefitsof Canola Oil

Fall 2013paTIENT WELLNESS

Creamy Pumpkin-Apple BisqueCurlupbythefireandenjoythetasteofwinterwiththisdecadentsoupIngredients: 1 Tbsp canola oil 1 cup diced onions 1 cup of applesauce 1 can (14oz) reduced-sodium chicken broth 1/2 of a 15oz can solid pumpkin 2 Tbsp brown sugar 1 1/2 tsp ground cinnamon 1/2 tsp ground cumin 1/2 tsp salt 1/8 tsp cayenne pepper 1 1/2 cups fat-free half and half 1/4 cup fat-free sour cream

Instructions: • Heat canola oil in a large saucepan over medium-high heat. Add onions, cook until onions begin to brown, then add applesauce and stir.

• Place onion/apple mixture in a blender with 1 cup chicken broth. Secure lid, and puree until smooth. Return onion mixture to saucepan; add all remaining ingredients, except half and half and sour cream. Bring to boil over high heat, reduce heat, cover tightly, and simmer 15 minutes.

• Remove from heat and gradually add half and half while stirring. To serve, spoon equal amounts of soup into four shallow bowls and top with dollops of sour cream. Yield: 4 servings; serving size: 1cup.

Fiber. Fiber helps digestion of food which leads to more efficient absorption of food nutrients.

Potassium. Helps support healthy digestion.

Iron. Helps support a strong immune system.

VitaminA. Helps boost the immune system, as well as keeps your eyes, bones and teeth healthy.

VitaminE.Helps protects cells from damage that may lead to cancer.

HealthBenefitsof Pumpkin Purée

VitaminCA powerful natural antioxidant that blocks some of the damage caused by free radicals, as well as boosting the body’s resistance against infectious agents

B-complex vitamins (riboflavin, thiamin, and vitamin B-6) - these vitamins are key in maintaining red blood cells and the nervous system in good health.

DietaryfibeCan help prevent the development of certain diseases and helps prevent the amount of bad cholesterol in your blood from rising.

PhytonutrientsHelps protect the body from the detrimental effects of free radicals.

MineralsSuch as calcium, potassium, and phosphorus.

HealthBenefitsof Apples

Article References: SaskCanola (Saskatchewan Canola Development Commission) , SFGate, & Medical News Today Retrieved from: www.saskcanola.com , www.healthyeating.sfgate.com , & www.medicalnewstoday.com

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Fall 2013paTIENT STORY

On June of 1999 I was diagnosed with Scleroderma. No one knew anything about this horrible disease. We sure found out in a hurry. The disease progressed

and I ended up with Pulmonary Fibrosis and later Pulmonary Arterial Hypertension. During this period I started using oxygen on October 2007.

I ended up in the hospital November 2011 and was there for 52 days with a lung collapse. The lung would not seal till I returned home after one week. The doctor suggested I go to palliative care till my lung healed but I was not ready for that. Palliative care gave me a wakeup call. I thought this was the end of my life. To my surprise my respirologist suggested a lung transplant which I thought was not possible with someone with Scleroderma. The respirologist contacted Toronto General Hospital with the lung transplant team to check to see if I was a good candidate. A lot of testing was done in Toronto to make sure I could get a lung transplant. The testing started in the summer of 2012 and I was listed on the lung transplant list October 30th, 2012. With an exercise program that was mandatory 3 times a week in Toronto my wife and I decided to relocate to Toronto at the end of Janu-ary 2013. I was scared that I would miss my call due to bad weather because of the winter season. To our surprise after 11 days of being in Toronto we got a call from the lung transplant

team that they had a set of lungs for me and how soon could I get to the hospital. We rushed to the hospital in my wheelchair which was 10 minute walk.

At the time we were not sure these lungs would meet the trans-plant team approval. We waited 12 hours before we found out that I was going into surgery. I was ready for this surgery as my lungs were deteriorating fast. I didn’t know how long my own lungs would keep me alive. After 9 hours of surgery I was brought to the ICU and according to my family I looked like an octopus with all the tubing that was attached to me. Within a few days I was breathing on my own with my new lungs. This journey started so quickly I never had a chance to get scared. In my mind I was ready for this journey as I knew I didn’t have much time to wait as my old lungs were deteriorating and with the bad experience of my lung collapsing. I was in the hospi-tal 14 days after transplant. There was a lot of pain but with medication the docs had me pretty comfortable. As for today I’m doing great but a lot of medication for life. I’m able to play with my grandkids and enjoy the sport that I love, golfing and hopefully do some travelling in the near future. Without family and friends support and specially the lung transplant team this would be impossible. The biggest link to my journey is my lung donor and his or her family whom by the way are my heroes.

My Miracle JourneyBy: Jim Davey: London, Ontario, Canada

Jim Davey and wife Helen - recovering well and enjoying life after double

lung transplant operation

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Fall 2013pUBLIC aWaRENESS / FUNdRaISING

One of our family members has been stricken with Scleroderma, an auto-immune disease. Her lungs are being destroyed by the disease and she is not a can-

didate for a lung transplant. There is no cure and her life expectancy is short. She is only 49 years old and single; she lives in Australia- not very close to our homes in Nova Scotia. To honour her, we hosted a fundraiser Tea at a local yacht club in Dartmouth, NS on September 29, 2013 to raise mon-ey for Scleroderma Research. We were fortunate and very thankful to have Scotia Bank sponsor this event. It was a beautiful warm, sunny day! 85 tickets were sold. The tables were set with fine china and flowers from my gar-den. The finger sandwiches and sweets were plentiful. The tea and coffee pots were filled and ready. The many Silent Auction items were displayed for perusing. The second hand books, hoping to find new homes, were piled high. The door prizes would go to the lucky winners. Wonderful family and friends had worked hard to help me set-up and serve, as well as donate various items beforehand.

 I had never dreamed the Tea would be such a big success and so much fun! I welcomed everyone and then read a thank you letter from my sister who is the one ill. You could hear a pin drop and there were wet eyes in the audience. I hope she could feel all the love in that room down under! Then the silence ceased! Everyone enjoyed lunch and much conver-

sation took place. There was a bit of fun with some auction items-the bidding war really helped our cause! The used book pile was getting smaller as favourite authors were picked up. The ladies and men(a few) pinned on their new Scleroderma pins and took infor-mation brochures to read later.  We raised a bit over $3000 that day. Sco-tia Bank matched the $3000 (three of their staff assisted with the Tea - one being our cousin) to bring the total to just a bit over $6000 to donate to the Scleroderma Society of Canada for research! What an awesome day! Many thanks for their time, kindness and generosity to everyone who helped make this happen! Hope for Carol continues…

WhatWeDidToHelp:

ASclerodermaTeaPartyFundraiserDartmouth, Nova Scotia, Canada

Family and friends who attended the Scleroderma Tea Party Fundraiser

Scleroderma Society of the Atlantic Provinces

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Fall 2013pUBLIC aWaRENESS

When you are diagnosed with a disease, it can be easy to believe the worst-case scenario. Artists think differ-ently. For Whitehorse singer-songwriter Nicole Ed-

wards, scleroderma has been a part of her life for more than a decade. The build-up of collagen and hardening of connective tissue has made her life more difficult. It has taken away her ability to play instruments, but not her ability to create. “I don’t want to be looked at as, ‘Oh, there’s that sick musician.’ I want to be looked at as a musician,” Edwards said.

Edwards has created a video outlining her journey and many musical successes - it which was played during the 2013 Sclero-derma Canada Congress in Hamilton, Ontario. “It’s inspiration-al and motivational for other patients to realize that although there are challenges that come with this illness, they don’t have to steal your dreams,” said Maureen Sauvé, President of the Scleroderma Society of Canada and the Scleroderma Society of Ontario. “They can change your dreams but you can still contribute and maintain the things in your life with just a little bit of modification.”

The video created for the event received nearly 1,000 views online in the first three weeks it was posted. “That’s a lot of views,” Edwards said. “The video is going to be screened at the conference. But I’m finding that, the way the Internet is, a six-minute video really can reach people with scleroderma all over the world,” she said. Living with illness is a theme of many of Edwards’s songs. “As a musician I want to reach out to other people who might be able to relate to my experience or relate to what I am writing about,” she said.

Edwards was 29 years old when symptoms started appearing in

1999. She was officially diagnosed with scleroderma in 2001. It’s been a struggle for Edwards to find the balance between acknowledging the autoimmune disease and not allowing it to define her life. “I really struggle with not wanting scleroderma to be my identity. If I want to have a good quality of life, I’m so much more than my illness,” comments Edwards.

But, in a relatively small community of people with the disease, Edwards said she is realizing that there is a role for her, espe-cially when it comes to those who are newly diagnosed. It is es-timated that about 16,000 people in Canada have scleroderma, putting it at the upper end of the rare disease classification. When she was first diagnosed, Edwards had never even heard of scleroderma, she said. “What I feel good about is offering an alternative to the sad stories ... especially for people who are newly-diagnosed, I think there is an important role to play in providing hope for quality of life. Your chances of survival are higher if you have hope.”

Sauvé believes Edwards’s story can provide that kind of hope. Sauvé points out that depression among people with scleroderma is higher than among the average population. “Nicole could have sat around with her head in her hands and been depressed and had every reason or excuse for doing so,” said Sauvé. “But in-stead she found away to modify her dream and make it realistic.”

For the month of September, 20% of all digital sales of Edwards’s music have been donated to the Scleroderma Society of Canada. The video created for this weekend’s event and information of Edwards’s music can be found at: www.nicoleedwardsmusic.com or www.sclerodermaontario.ca and look for the link that will take you to Nicole’s video.

Nicole Edwards Shares Her Story with a National AudienceBy: Ashley Joannou: Whitehorse, Yukon, Canada

Whitehorse singer-songwriter Nicole Edwards has Scleroderma, which is the hardening of connective tissue.

Article Originally Published in: Yukon News (Sep. 27, 2013)Retrieved from: http://yukon-news.com/arts/nicole-edwards-shares-her-story-with-a-national-audience/

p. 14

Fall 2013

T he Scleroderma Association of Manitoba and the Scleroderma Society of Canada are pleased to host the 15th Annual Scleroderma Conference in Winni-

peg, Manitoba. The Conference will be held at the Canada Inn Polo Park (A Fragrance Free Hotel), Friday, Septem-ber 19th and Saturday, September 20th, 2014. 

The theme of the 2014 Scleroderma Conference will be “An Integrated Approach - Creating a United Front”. The vision behind this theme is that we, as Scleroderma pa-tients, in addition to traditional medicine, often integrate a number of alternative treatment modalities to optimize our health and well-being. We need, and use a team of

medical professionals ranging from family physicians to rheumatologists, respiratologists, gastroenterologists, der-matologists, naturopaths, physio/massage therapists, di-eticians and more. To the conference, we are lining up and excited to present some very knowledgeable and interest-ing and speakers - some with traditional and some with al-ternative approaches to managing scleroderma health is-sues. Also as part of the conference we will be hosting a “Patient Advocacy Panel” which will discuss “Everday Life Tips and Tricks” for Scleroderma.

For additional information, please visit our website:www.sclerodermamanitoba.com

SAVETHEDATE!September19&20,201415th Annual Scleroderma Conference tobeheldinWinnipeg,Manitoba

UpCOMING EVENT

Scleroderma Society of Canada SclerodermaAssociationofManitoba

p. 15

Fall 2013MaKING a dIFFERENCE

Donating a gift is a reflection of who you are as a person, your values, aspirations, and your commitments. It is a purposeful and effective way to fund medical research

and support those affected by scleroderma - both now and in the future - since today, there is no way to prevent scleroderma and there is no cure. Thanks to scientific advances treatments are available to help alleviate or slow the progression of some of the symptoms, but not all of the most serious complications of the disease.

Contributions to the Scleroderma Societies and Associations support promising scientific and medical projects as well as inno-vative research studies used to engage government organizations and health industry partners for longer term investment funding programs. Until new therapies are made possible by advances

in medical research, people living with scleroderma continue to have hope, knowing that researchers are working every day on their behalf. There many ways people and corporations can give ... to honour, celebrate, remember or support a loved one.

For more information, please contact the Scleroderma Society of Canada Office at telephone number:1-866-279-0632 or e-mail: info@scleroderma.ca

An information leaflet about the Scleroderma Making a Difference Gift Giving Program is available through the Scleroderma Society of Ontario web-site at:

www.sclerodermaontario.ca/Scleroderma-Information-Brochures.html

LeavingaLegacy

Lyn BakerStuart WalkerMarcle LaPorteConcetta FidanzaJoe MattiacciGiovannia VillellaFlorence Logan

Andy GardinerJenny Maria OrizagaMary L. McKenziePeter ErrattAnne KennedyMarlyne Olga PerlinRobert Kerr

Rosemary JohnstonSheilah RogersCarroll VapsvaMarlene StaintonOlga RomeroMuriel BrownLucille Lajambe

Frank Van WagnerGeraldine DouglasDavid C. JamesArt Robson Babe SilvaDean HareJohn Dobo

Inez Joan WallatorAnna Marie PyettLucille SilvaSandy AllanJan SavorelliAnn Pastor GrespanAnnie Ellis

In MemoriamThe Scleroderma Society of Canada gratefully acknowledges the

generous donations made from family and friends in loving memory of:

I wish to make a donation:

$100 $50 $25 Other: $

Scleroderma Society of Ontario

Name:

Address:

City: Postal Code:

Telephone:

Email Address:

Please make cheque to the order of:Scleroderma Society of Ontario41 King William Street, Suite 206Hamilton, ON L8R 1A2

Fall 2013SUppORT & CONTaCT INFORMaTION

Please sign and return with your donation. *This information will remain confidential.

I am making a donation: by cheque (Scleroderma Society of Ontario) by credit card MasterCard VISA Expriation: /20

Card No.:

Signature:

I wish to receive an official receipt for tax purposesI wish to receive the Scleroderma Connection newsletter by mail by e-mail

The Scleroderma Society of the Ontario (SSO) is a registered charitable organization, No. BN86958 8772 RR0001. SSO may retain your contact information & represent you, but it will not share your contact information with any persons or organizations without your prior consent. Upon your request, your name will be removed from the SSO’s contact list.

Scleroderma Society of Ontario GroupContactsBelle River Kandy Kurkcuyan (519) 979-6447 Brantford Fran Wolff (519) 752-6648 kwolff2@rogers.com Haldimand Irene Goodale (905) 765-0818 imgood@295.ca Halton John Littler (905) 849-8356 Hamilton Isabelle Sevsek (905) 388-4337 hamiltonsupportgroup@gmail.com London Bea Kiekens (519) 641-6275 kieksjb@rogers.com London Bill Birtch (519) 281-8143 wbirtch@rogers.com Midland/Orillia Jeannette Brunelle (705) 526-9869 nettebrunelle@sympatico.ca Mississauga Vidas Vapsva (905) 822-7868 vapsva@rogers.com Niagara/St.Catharines Barry Toth (905) 646-8064 btoth@cogeco.ca Ottawa Aline Laporte (613) 745-7829 sclero@rogers.com Pembroke Ralph Bergsma (613) 735-3313 rbergsma@sympatico.ca Sarnia Susan Dunn (519) 541-1064 Scarborough Naana Daniels (905) 686-7265 naanash67@yahoo.com Thunder Bay Rose Marie McCracken (807) 344-8345 Tillsonburg Julie Desplenter (519) 842-3451 wjdesplenter@kwic.com Toronto Maria Colavecchia 1-888-776-7776 maria.colavecchia@sclerodermaontario.ca Toronto Kaarina Rennie 1-888-776-7776 sclerogrrl@yahoo.ca

Scleroderma Society of Ontario2012/2013

BOARDOFDIRECTORS

President Maureen Sauvé Vice President Rebecca Wissenz Legal Cathy Jeske Treasurer Brian Hinchey Director Cynthia Bush Director Brittany Stager Director Helen Habinski Director Karen Nielsen Director Stephanie Howe Director Rebecca Wissenz Director Ann Seminiuk Director Theresa Greenholm Director Scott Balinson Director Jason Worron Director Steve Kulakowsky Director Kandy Kurkcuyan Director Jennifer Bothelo

Scleroderma Society of Ontario

41 King William Street, Suite 206

Hamilton , ON L8R 1A2

DISCLAIMER

The Scleroderma Society of Ontario

does not endorse any treatment, drug

or diet reported in this newsletter.

Please check with your doctor.

Tollfree:1-866-279-0632

www.sclerodermaontario.ca

SclerodermaTreatmentCentres(bymedicalreferralonly):Dr. Nader KhalidiMcMaster University/St. Joseph’s Healthcare Hamilton 25 Charlton Street E., Suite 708, Hamilton, ON, L8N 1Y2Tel: (905) 521-9034 • Fax:  (905) 521-8099

Dr.MaggieLarcheMcMaster University/St. Joseph’s Healthcare Hamilton 25 Charlton Street E., Suite 502, Hamilton, ON, L8N 1Y2Tel: (905) 308-8319 • Fax:  (905) 523-8466

Dr.SindhuJohnson&Dr.PeterLeeMount Sinai Hospital, Joseph & Wolf Lebovic Health Complex60 Murray Street, 2nd Floor (Main), Toronto, ON, M5T 3L9Tel: ( 416) 586-4800

Dr. Janet PopeWestern University / St. Joseph’s Hospital LondonRheumatology Clinic Room D2-101, 268 Grosvenor St., London, ON, N6A 4V2Tel: (519) 646-6100 ext. 66332 • Fax: (519) 646-6334

Dr. Douglas SmithThe Arthritis Centre, The Ottawa Hospital Riverside Campus1967 Riverside Dr. Box 37, Ottawa, ON, K1H 7W9Tel: (613) 738-8400 • Fax: (613) 738-8336

Dr.RonaldLaxerorDr.ElenaPopeUniversity of Toronto/The Hospital for Sick Children555 University Avenue, Toronto, ON, M5G 1X8Tel: 1-877-252-9900 • Email: helpdesk@echn.ca

Helpful Resources:

Scleroderma Society of Canada Tel: 1-866-279-0632 • www.scleroderma.ca

Scleroderma Foundation (United States) www.scleroderma.org

PacificLungHealthCentre www.pacificlung.com

Sjogren’sSyndromeSupportGroup www.sjogrens.org

Raynaud’s Association www.raynauds.org

Arthritis Self-Management Program (416) 979-7228