CBDC Launches New WebsiteCompbleed.com is brand new! More details inside, Page 3.

CBDC Explores the Carribean

As you may already know, CBDC Medical Di-rector Dr. Osvlado Wesly was born and raised in the Dominican Republic. He is familiar with the struggles that patients and medical professionals in developing countries face. It is his desire that CBDC begin to explore ways that the Center can expand its influence out-side of Illinois and beyond the US border to bring comprehensive care to patients with bleeding disorders.

New RN in Southern IL

CBDC has seen significant growth this year in Southern Illinois. To be able to meet that need we hired a nurse coordinator dedicated sole-ly to serving patients in Carbondale, Effingham and the surrounding areas. Nurse Coordinator, Brittany, comes to us from Memorial Hospital ofCarbondale. In addition to her normal duties in our Outreach Clinics, she also provides our patients Home Infusion services and Home Infusion Training.

Brittany lives in the Carbondale area and enjoys working out, watching movies, shopping, and anything outdoors.

Her favorite quote is from Vivian Greene, “Life is not about waiting for the storm to pass, it is about learning to dance in the rain.”

CBDC NEWS

THE DR PLET

Volume 1 / Issue 2 / FALL

Inside... Frequent Miscarriages & Hematology..................................Page 2

All new website for CBDC.......................Page 3

CBDC News, continued......................Pages 4-5

Comfy Fall Classic Recipe......................Page 6

CBDC Calendar & Feature.....................Page 7(Continued, Page 4)

Some people think of hematol-ogy as simply a medical spe-cialty, others know that it is spe-cifically the study of blood and its many components. Even so, common knowledge of bleed-ing and clotting disorders usu-ally only extends to more well known conditions like hemophil-ia, von Willebrand disease, and anemia.

What most don’t realize is that symptoms of blood disorders can often manifest themselves in ways the average person may not realize that a trip to the he-matologist is in order. Hematol-ogy has the potential to branch into nearly any other medical specialty. This is one of the rea-sons its study can be so fascinat-ing and also why it is sometimes thought to be very complex.

When possible, we attempt to tie hematologic learning and re-search together with other medi-cal specialties. One condition that is often over-looked by primary care provid-ers and women’s health profes-sionals is frequent or recurrent miscarriages. The phrase “recur-rent miscarriages” for purposes of research, is defined as having three consecutive pregnancy losses prior to reaching 20 weeks of gestation.

Pregnancy loss is a very com-mon occurrence, with up to 20% of known pregnancies ending in miscarriage* and recurrent mis-carriages occur in up to 2% of all women**. Since recurrent mis-carriages pose profound medi-cal, financial, and emotional threats to the individual and af-fected families, it is important to

understand hematologic condi-tions that are commonly associ-ated with frequent miscarriages including:

Factor V Leiden MTHFR mutations Protein C deficiency Protein S deficiency

Each of these thrombophilias, or clotting disorders, cause an in-creased risk of blood clots in ma-ternal/fetal circulation, which in turn can cause problems with pla-cental development and nutrition-al delivery to the fetus. All of these conditions are commonly man-aged by adult hematologists, like CBDC’s very own Medical Director, Dr. Osvaldo Wesly.

When these risk factors are present, primary care providers and obste-tricians should collaborate with an adult hematologist to initiate test-ing. A patient that is diagnosed

with a thrombophilia by the CBDC team may be treated before or early on in their pregnancy. Treat-ment options will vary by patient and may include extra folic acid and/or preventative/therapeutic anticoagulation medications.

Women that experience any health concerns should be educated on possible causes and treatment op-tions. Those that experience fre-quent miscarriages should be test-ed for possible hematological risks. Once diagnosed, the hematology team at CBDC will make sure that they understand their options re-garding treatment...this greatly in-creases the chance of positive out-comes and future well-being.

For more information on frequent or recurrent miscarriages please con-tact CBDC at (888)322-8670 or via email at info@compbleed.com

FREQUENT MISCARRIAGES & HEMATOLOGYContributed by: Dina Witter, RN

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*Mayo Clinic, 2013; **Reviews in Obstetrics & Gynecology, 2009

www.compbleed.comThe all new...

If you haven’t already, please visit www.compbleed.com today and let us know what you think - we appreciate all feedback. Our marketing coordinator, Ryan,

can be reached at rhinnen@compbleed.com. Thank you!

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New, continuous stream of news, including recent events, pharma-updates, archival articles and pa-tient showcasing feature stories

Revamped online registration and ordering portal allows for stream-lined prescription fulfillment

Expanded Bleeding and Clotting disorder pages, and new, inter-page Blood Disorders Glossary all written in layman’s terms

Real-time updated events cal-endar, includes important CBDC and key regional/national event dates

Enhanced communications op-tions including access to online forms for patients and providers, staff email, and easy social shar-ing buttons

www.compbleed.com is available in English, Spanish, and Polish

After a spring and summer of hard work, Comprehensive Bleeding Disorders Center launched the new www.compbleed.com on September 1st.

We conducted a series of internal focus groups and external surveys to put together, what we feel, is the best resource possible for our patients (and

potential patients), their families, and our partner providers.

We now boast over 100 pages (and counting) of content dedicated solely to the bleeding and clotting disorders communities. Please enjoy.

For more information on this project, in-cluding ways that you can help, please contact our Outreach Coordinator at tjoseph@compbleed.com or by phone at (309)688-1345 or (888)322-0917.

Ready for Anything!In August, the majority of the CBDC Staff underwent training to become certified (or renew their certification) in the use of CPR and Automated Electronic Defibrila-tors (AED) through the American Red Cross.

CBDC attends NHF2013The 65th Annual Meeting of the National Hemophila Foundation took place from October 3rd-5th in Anaheim, CA.

CBDC’s Nurse Coordinators Brittany and Dina were sent as representatives of the center. They were able to participate in numerous sessions about patient care, family support, and leading edge de-velopments in the world of hematology. They were also able to network with great organizations and providers from around the world.

CBDC NEWS, continued

ANAHEIM, CA OCTOBER 3-5

NHF’sTHANNUALMEETINGUnited in Progress

TOP 5 BEST THINGS ABOUTNHF2013

according to Dina & Brittany

1.) The conference was a great in-troduction to NHF for CBDC’s 2 new

nurse coordinators.

2.) It was a priveledge to interactwith so many families effected by bleeding disorders.

3.) The venue had access to family friendly activities.

4.) The opportunity for face-to-face networking and availability of hema-tologic resources can’t be matched stateside.

5.) The energy surrounding the con-ference goals and educational sessions was overwhelmingly positive and a celebration of what patients CAN do!

(Carribean, continued)

Using the hashtag #HemoCare, we were able to share numerous insights on best practices, answer questions about our experi-ence as a Hemoph-ila Treatment Facility, and express our pride in having Dr. Wesly as our medical director. In addition we were also able to provide access to the new www.compbleed.com in over 8 different languages in honor of the occassion. Our web analytics show that we had visitors from 40 different states and 24 differ-ent countries the day of the event. For information on the next twitter chat, you can follow Comprehensive Bleed-ing Disorders Center and our Fuchsia group for girls and women with bleed-ing disorders on twitter @compbleed and @FuchsiaSupport.

Global Twitter PartyOn October 1st, CBDC participated in the first ever Global Twitter Party that was put on by the World Federa-tion of Hemophilia (@wfhemophilia).

GENTLE YOGA & YOU!Yoga is a great exercise, especially for people with bleeding disorders. During a yoga session, special at-tention is placed on strengthening your muscles and in-creasing your flexibility, without impacting your joints.

Since June, Fuchsia has been taking part in monthly gentle yoga sessions, led by Cynthia Edmonds at Senara Health and Healing Center in Peoria, IL. Community Health Program Manager, Stacey Beuster, had the opportunity to have a little Q&A with Cynthia on the benefits of yoga.

Stacey Beuster: What health benefits are there to yoga?Cynthia Edmonds: Yoga makes you feel better and young-er. Yoga helps you develop a more flexible and balanced body and mind. A regular practice helps you grow stron-ger and more toned. It is weight-bearing, so it builds strong bones and will prevent osteoporosis. Yoga improves posture and better breathing. Your practice will help you sleep better and reduce stress. SB: How can practicing yoga help manage stress?CE: A yoga practice requires you to go inward and quiet the mind, being fully present and following the breath in and out. That focus quiets the “chitta” or monkey brain and calms the nervous system, reducing stress within minutes of beginning each practice. This in turn helps each person relax more. At the end of each class, we practice Shavasna (deep relaxation) and these combined techniques help us sleep better, which continues to reduce stress.

SB: Who should/should not practice yoga?CE: Anyone can practice gentle yoga. A practice can be modified to work around injuries, joint problems, or while recovering from illness. Some teachers, like myself, have additional training and specialize in injury rehab, yoga ther-apy and working with beginners. My goal is always to keep people safe and to prevent injuries with careful alignment and teaching students to slow down (both their minds and bodies) and work with focus.

To read the entire article about “Yoga for people with bleeding disorders” or to check out Fuchsia’s other great events please visit us online at www.compbleed.com/fuchsia.

uchsiafITP Awareness MonthIn September CBDC celebrated national ITP Awareness Month along with the Plate-let Disorders Support Association and the ITP Support Association. On September 27th, the office wore purple in recognition of Purple for Platelets Day.

Outreach staff also visited several local businesses to hand out purple candy and spread awareness.

Skillet CornbreadComfy Fall Classic

Serves 6-8

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Ingredients 2 cups fine yellow cornmeal 3 tbsp sugar 1 tsp fine sea salt tsp baking soda 2 large eggs, beaten 2 cups buttermilk 6 tbsp unsalted butter Cool butter, for serving Molasses or honey, for servingUtensils Fork, knife, spatula Measuring utensils Large bowl for mixing Cast-iron skillet (may be substiuted with regular 8” skillet or cake pan/tin)Directions Preheat oven to 400° F Whisk together dry ingredients in a large bowl until evenly distributed Using hands, make a crater in the center of the bowl Crack eggs, add buttermilk, and combine with fork, start in the center to break apart the eggs, then stir in the dry ingredients to make a smooth batter Melt 6 tbsp butter in the cast-iron skillet over low heat (if using a cake pan/tin, melt the butter separately in the microwave) Once melted, turn off heat and pour the butter from the pan into the batter - stir mixture together with the fork Pour the batter back into the warm skillet Bake in the center of the oven, 22-25 minutes, or until cornbread is lightly golden brown and slightly wet looking in the center

Remove from the oven before the cornbread is completely set, at which point the texture changes from custardy to more traditional. The bread should slightly pull away from the sides of the skillet once out of the oven. Take skillet directly to the table, slice, and serve with butter and honey or molasses. Also great as a side with a warm bowl of hearty soup or chilli.

Used w/ permission from the author, Sarah Copeland “The Newlywed Cookbook”

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Important Dates & Upcoming EventsOctober 26th - Women’s Lifestyle Show @ 8-5p - Peoria Civic Center 27th - Happy Birthday to Nurse Coordinator, Brittany!

November 9th - fuchsia Gentle Yoga @ 11a - Senara Health & Healing 15th - Happy Birthday to CBDC Executive Director, John! 23rd - Happy Birthday to Medical Social Worker, Martha! 28th - CBDC OFFICES - SPECIALTY PHARMACY OPEN - Happy Thanksgiving

29th - CBDC OFFICES - SPECIALTY PHARMACY OPEN

December 3rd - fuchsia Pinterest & Pizza Party @ 5:30p - CBDC Peoria 7th - fuchsia Gentle Yoga @ 11a - Senara Health & Healing 24th - CBDC OFFICES - SPECIALTY PHARMACY OPEN 25th - CBDC OFFICES - SPECIALTY PHARMACY OPEN - Merry Christmas! 31st - CBDC OFFICES - SPECIALTY PHARMACY OPEN

January 1st - CBDC OFFICES & SPECIALTY PHARMACY CLOSED - Happy 2014! 10th - Happy Birthday to Nurse Coordinator, Dina! 29th - Central Illinois CBDC Family Night - Invitations Forthcoming

We first met Joe Gassiraro last year as he was participating in CSL Behring’s “Gettin’ in the Game” Junior National Golf Tour-nament in Dallas, TX where he was one of 96 other young men and women chosen to represent their state hemophilia chapters. As a representative of Gateway Hemophilia Association (NHF’s Missouri and Southern IL Chapter) he showcased his talent by win-ning the Longest Drive contest.

We recently caught up with Joe and had the chance to ask him a few questions about his summer, golf, the upcoming school year, the future and living with a bleed-ing disorder (Hemophilia B).

Tom Joseph: Thanks for taking

the time to answer a few ques-tions today.Joe Gassiraro: No problem

TJ: Tell our readers a little bit about yourself.JG: I’m 14 years old and I live in Edwardsville, IL. I like history a lot. I’m kind of a nut with that. I build plane gliders. I read a lot. Don’t really play video games too much. Aside from golf, I do soccer and track and plan to do both in high school. I have a lot of favorite movies, but one of my favorites has to be “Get Smart”.

I’d say my favorite books are “The Beyonders” series (Brandon Muller)

TJ: How long have you been golfing?JG: About 2 and a half to 3 years. I’ve been doing it for a while but haven’t taken it very seriously un-til recently.

TJ: How has living with a bleed-ing disorder affected your life?JG: I guess its changed it a little bit, I don’t have a strong desire to play hockey or football. I don’t like to get hit in the head any-way whether I had hemophilia or not...

To read the rest of this Q&A please visit us online at

www.compbleed.com/JoeG

CBDC Feature: Joe Gassiraro