Education

I strongly believe in educating the public as well as they medical community about Scleroderma. Every physician, no matter what their speciality, should be able to identify and diagnose a patient with scleroderma. That’s why my mother and I visit medical schools and lead patient educator sessions for 2nd year medical students. The earlier the disease is identified and treatment begins, the higher the success of the treatments.

When I was 9 years old my mom and I were asked to speak to a group of 100 second year medical school students. We were apart of a panel of patient educators helping teach the students about scleroderma. I went, but I expected to just stand next to my mom while she spoke about my journey with scleroderma. After a few minutes, I took the microphone and started telling my story side by side with my mom.

I have been invited to speak at Central Michigan University in Mt. Pleasant, MI since 2016. To date, I have spoken to 9 classes of future doctors at CMU alone. These patient educator panels are such an important way to help doctors identify scleroderma in their patients as early as possible. It helps to highlight the different types of scleroderma and the variety of ways the disease can present itself, allowing future doctors to see several different patients in person at one time.

Since I was nine years old I have been asked to speak at a variety of universities about systemic scleroderma and interstitial lung disease. I have spoken at: Central Michigan University, Wayne State University, Michigan State University and Oakland University. Several other patients have joined me to speak on these panels with different types of scleroderma including: En Coupe De Sabre, Morphea/localized scleroderma, CREST, as well as other patients with systemic sclerosis like me.

One of the first people I spoke with at CMU was my friend Michael. He also has systemic sclerosis. Only 20% of patients with scleroderma are male. That makes Michael and I very unique, because less than 10% of patients with scleroderma are children. That’s why it’s important to have a variety of scleroderma patients educate future doctors, so they better understand the wide range of patients, their needs, and the different ways the disease manifests itself in each patient.

I am glad to share my scleroderma story any time an opportunity comes along. I have spoken at several different scleroderma walks, school events, various social clubs and of course, the medical schools who invite me to speak. I have also shared my journey at scleroderma support meetings to help parents understand what their children may be going through, and to give them hope that things will get better.

In 2017 I was asked to tell my story for several Michigan news stations including WXYZ Channel 7, WDIV Channel 4, and Channel 17 in Cleveland. I have been interviewed by various organizations and foundations working for patients with scleroderma. I most recently told my story for CARRA (Childhood Arthritis and Rheumatology ResearchAlliance) and SRF (Scleroderma Research Foundation). By telling my scleroderma story, we bring awareness and education to people who have never heard of the disease. This brings us one step closer to finding a cure, and it helps others learn to support patients with scleroderma. (Pictured above with Andrea Isom from WXYZ 7)