Texas Bluebonnet Chapter Newsletter Winter/Spring 2014 President’s Welcome Message Dear Partners in the fight against Scleroderma, It is hard to believe we are already looking at March! Time has gone by so quickly and we are in full swing of activity. Our Board for the Texas Chapter has some wonderful ideas and we have started to implement several of them. Over the next several months our Board Members will be visiting all of our Support Groups and we are looking forward to meeting all of you. Follow us on Face Book and our Website. Jasminne and Jacob are working to get our social media current and running smoothly. Fundraisers are already in the works with several walks, patient educations, dinners, rummage sales and disc golf tournaments. These are just a glimpse of some of the things we have coming this year. Stay tuned we have a lot more in store! - Audrey What's Inside: Become A Member Today! 1- Meet Your Board of Directors 2- Scleroderma Stories The Scleroderma Foundation TX Bluebonnet 3- The Doctor Is In-Finger Ulcers Chapter needs you! 5- Chapter News & Events Are you a member already? Do you receive the 7- Scleroderma Spotlight: Johns Scleroderma Voice? Do you need to renew Hopkins Study your annual membership? Not sure? Please go to our chapter page and sign up to become a member of the TX chapter today. Get Connected! Your membership keeps you up to date on chapter news and events and helps raise TX Chapter FB Page awareness and provide funds for research. San Antonio Facebook Page Check out: www.scleroderma.org for more Corpus Christie Facebook Page information. Scleroderma Foundation Facebook Twitter: @sclerotxchapter Updated Support Group Contact Info To get in touch with your local support group leader please click HERE. Meet New Board Members Jasminne Mendez “I was diagnosed with scleroderma in May 2007. At first the diagnosis was very scary and unnerving. I did some research and found that there were support groups in my area and a community of people who shared my experience. I became an active member in the Scleroderma Foundation TX chapter participating in walks and volunteering at events. I decided to Why did you become a board member because I want to help become spread awareness and increase the public’s interested in the understanding of what scleroderma is and how they can help find a cure.” Scleroderma Foundation? Karen Padgett “I am interested in the Scleroderma Foundation because it makes me feel Sue Lane like I have found a place where I belong and people will understand what I'm going through. I became a member of the board “I am interested in becoming a more because I want to be involved in active member of the Scleroderma planning how to improve ways to Foundation because my best friend from educate the general public, work five years old was taken by Scleroderma closely with other's on making about eleven years ago. I would like to decisions on fund raising and improve help find a cure and I am aware of the our support group attendance as well amount of research that needs to be as get the chance to work with done and the funding necessary to medical professional's to educate the accomplish that. As a board member, I ones that aren't familiar with this would like to try to get into the illness. Lastly, I want to help find a corporations to get grants or large cure so no one else will suffer with donations for research. I also see a need this mean illness. If I can make the for public awareness because very few difference for just one person it has people have ever heard about it or all been worth my time.” understand what it is. Therefore, it is my hope that I can be helpful in those areas.” Scleroderma Stories “I accept my scleroderma, because it's who I am.” My name is Kelly Marie Williamson and I am 17 going on 18. I was born on April 4th, 1996 to my parents Robert and Betsy Williamson and my 3 siblings Kyle, Karis and Kenney. I lived in South Florida for the majority of my life until 9 months ago, when I moved to Houston. South Florida however, is where my journey began when I was four years old and my scleroderma started showing in the form of white spots on my body. My pediatrician decided to send me to a dermatologist because she wanted them to confirm that I had Vitiligo, but when I went to the dermatologist they found a lesion in the crook of my right knee. They took a biopsy and when the test results came back negative we had no reason to believe it was Vitiligo. One afternoon, some months down the road, my father took my sister for a doctor’s visit to the same pediatrician and I went along for the ride. Upon seeing how advanced my scleroderma had become, it now included dark, hard patches of skin, she referred us to a pediatric rheumatologist and a pediatric dermatologist. In May of 2001 I was officially diagnosed with Linear Morphea Scleroderma by Dr. Rafael Rivas Chacon, of Miami Children's Hospital, along with a Chiari I Malformation and Sleep Apnea. In the years to come I had my tonsils taken out to cure my sleep apnea, and Dr. Rivas Chacon started me on the medicines. I was on Methotrexate, Prilosec, Prednisone, and Folic Acid, which we were told was like a pill form of Chemotherapy. As life continued I stayed on my regiment of medication and doctor visits. With the scleroderma spreading down my leg I endured physical therapy to help the continuation of my muscles ability in my leg as I grew. I used a wheelchair as a child quite a bit because walking for long periods of time was a difficult task for me. When I was four years old, the Make A Wish Foundation granted me my wish of going to Disney World with my family, where I celebrated my fifth birthday. In the following years I grew up like a normal kid. I went through school although adjustments were made to make me comfortable in my classes, like taking my shoes off because of the deformities on my right leg, or taking naps because my medication made me drowsy. Most of my teachers even took their time to research the disease so they were more knowledgeable. When I hit middle school I had to have my doctor write notes for me to get out of dress code due to the unevenness of my hips, and to also get out of certain activities in gym. I went through a stage where I didn't know what to do with my body. I was uncomfortable with it and it's changes when I hit puberty because I had different issues then most girls. As a teenager afflicted with scleroderma, I looked at life through a different lens. I lived on a deeper emotional level than most others, and I had a deeper sense of compassion. I never judged others because I knew what it was like to be judged. While growing up I always tried to give everyone a chance, and let them know that I was absolutely one person they could count on as a friend. I always say: "I accept my scleroderma, because it's who I am." My journey with scleroderma has led me to experience moments that have made a lasting impact on me. I grew up caring a little more, understanding a little more, and loving a little more. I have met so many wonderful people and bonded over the fact that we have an illness, whether the same or not, that most people haven't heard of. And within each of those separate moments, over time, I learned I am just as normal and regular as the rest of the kids around me. I am just unique. This disease has sculpted me physically and mentally. It has helped me realize over the years that just because I have this disease doesn't mean I can't achieve my dreams. I see my future being bright and long. I know that I'd like to go to college and head into the field of chemistry and create cures for diseases. I'd like to continue on in my journey of spreading my story about my life with scleroderma and I'd love to find more kids with scleroderma so I can make them realize that they aren't alone. The Doctor Is In This winter has been a brutal one, even for us Texans. We have battled ice, snow, and cold rainy days. For those of us living with scleroderma, the cold can wreck havoc on our hands. Raynaud’s attacks can be severe and lead to digital ulcers. For our first “The Doctor Is in” segment, we interviewed world renowned Dr. Shervin Assassi on what ulcers are and how Scleroderma patients can manage this often painful and debilitating symptom. What are digital ulcers? Digital ulcer is a breakdown of the skin on the fingers. Digital ulcers in scleroderma patients occur typically on finger tips or knuckles. Why do Scleroderma patients get ulcers?(Causes?) The ulcers on the knuckles are typically cau sed by skin thickening and/or minor trauma while the ulcers on the fingertips are caused by the decreased blood flow to this area. The low blood flow is initially caused by the Raynaud’s phenomenon.