Over a decade ago, while living in the dry desert of Tucson, AZ, I repeatedly washed out our newborn's bottles after each feeding. As a first time Mom who was sleep deprived, I noticed the cracks on my fingers that wouldn't heal and soon became larger open wounds. (Later I would learn this was called "digital ulcers"...a fancy name for PAINFUL finger sores that are difficult to heal.) I thought this was normal due to my situation of dry climate and hands constantly in water. The pain became excruciating so I sought out medical help. After several appointments with medical professionals and taking major narcotics, I was officially diagnosed with scleroderma, a disease that has become my new normal.
Fast forward to today: After making the decision to change up life to fit our new normal, we have moved back to Michigan from AZ where I sought out Dr. Khanna and the U of M Scleroderma Clinic. This team of caring individuals is paving the way not only to help treat my daily symptoms that can make life miserable, but also taking part in cutting edge research to find a cure so others don't have to suffer with this disease.
This team has given me amazing opportunities to gain knowledge about the disease, try different treatment options, be part of MY medical team and communicate not only on medically/scientifically but also on a warm personal level, and train me as a peer mentor so I can connect with other scleroderma patients and be a partner with them during this challenging journey. Dr. Khanna also confirmed my guess that my own father had scleroderma at age 72, making this more of a family affair!
My friends and family know that I try not to be a complainer and keep a positive attitude no matter how grim the situation, however I want to explain the things that I can no longer do or are quite challenging because scleroderma has attacked my body. Putting on make-up, chopping vegetables, vaccuuming, wearing contacts, cutting steak, opening bottles, picking up coins off a table, turning keys in a lock, buttoning shirts, writing thank you notes, blow drying my hair, getting stuff out of the freezer, running, socializing and entertaining, dental work, shopping for long periods, teaching school and becoming a principal (which was my life long dream), turning pages of a magazine....and the list goes on and on. I have learned to make adaptations so life is easier on me and my family. Scleroderma has been a blessing in disguise because it has taught me a life lesson: embrace each day like it is your last, live large and loud for things you are passionate about, love like no other and shine God's grace and light wherever your path leads.
My family and I are passionate not only about raising money for this wonderful, life saving team, but also increasing awareness and knowledge on this infant disease. I appreciate your time spent reading this page and can be a personal contact if you have any further questions or concerns. My 11 year old son who is healthy, active child that I hope grows up only having second hand information that scleroderma is a horrible condition that his Mom and Grandpa suffered. By helping fundraise for a cure he shouldn't have any first hand knowledge. There's nothing I wouldn't do for him!! Thanks again for your support that comes in so many ways.
Off to live life lovingly & loudly, Sheri
Scleroderma is an unpredictable, chronic disease that can lead to life-threatening complications. An autoimmune condition, it involves the buildup of scar-like tissue in the skin and other organs, such as the heart and lungs, and can make movement and breathing difficult. It is estimated that about 300,000 people in the United States have the disease, and its toll is great.
While it affects mostly women in the prime of their lives — between the ages of 30 and 50 — men and children can also have scleroderma. Of those with systemic, rather than localized, scleroderma, 34 percent do not survive for 10 years. Lung complications are the cause of 60 percent of scleroderma-related deaths. Because scleroderma can appear in various parts of the body, each patient experiences the disease differently. It therefore requires comprehensive, personalized therapy.
At Michigan Medicine, we take a wholly collaborative and research-based approach to treating this disease. Physicians work together across specialties, and we are developing sophisticated ways to measure outcomes so that we can evaluate the effectiveness of the care individuals are receiving — and at the same time look for patterns and clues that will help us develop more effective therapies for all.
June is Scleroderma Awareness Month, and you can help us fight this devastating disease! In our laboratories, scientists are advancing our understanding of the disease process and identifying new approaches to treatment. Our goal is to stop or reverse the features of the disease that affect patients’ quality of life and threaten their survival, work we believe will lead to preventing and curing scleroderma.
With federal funding for research continuing to decline, we depend on donations from private individuals like you. Every dollar raised during the month of June will make a profound difference.
YOU CAN BE A VICTOR Michigan Medicine’s scleroderma program is leading the way in treatment, in research, and in training the physicians and scientists who will continue to push this fight forward. With your support, we can accelerate health care toward a better future.
Help find a cure during Scleroderma Awareness Month