At the age of ten, Taylor Brown says her life changed forever. After years of painful symptoms, she learned she had en coup de sabre, an unusual form of linear scleroderma. This was a big diagnosis for a 10-year-old to comprehend.
Growing up, Taylor experienced headaches, nosebleeds and pain from a facial scar believed to be a birthmark. She also had problems stretching out one of her arms as far as the other and joint pain in her knees. Her mother, TaMetress Reed, started observing these symptoms when Taylor was only two years old, but doctors couldn’t explain them. It wasn’t until after a referral to a rheumatologist that Taylor and her mother learned that her scar and her condition had a name.
Taylor’s mother immediately started researching online to learn as much as she could to help her daughter live a full life. She found the Scleroderma Foundation and was excited to learn about the 2017 National Patient Education Conference. She promptly applied for a conference scholarship so that she and her daughter could attend.
TaMetress and her daughter knew this was an opportunity of a lifetime for Taylor to meet other individuals living with scleroderma, particularly other children. The conference more than exceeded their expectations.
Taylor says the Youth Program at the National Patient Education Conference gave her a better understanding of how to communicate what she experienced. “The thing I liked the most about the youth program were the different activities we did that helped us express how we felt from actual pain. I really loved when we did the activity drawing our bodies and showing everyone what our bodies feel like and where we have pain. That was one of the first times I think my mom saw how I really felt,” Taylor explains.
For Taylor’s mom, the parent sessions provided a wealth of information. “I was really lost in a sense but attending the sessions pointed me in the right direction. The conference enhanced my knowledge of things to expect, early detection of symptoms, and activities to help with all around health and how I can advocate more on Taylor’s behalf.”
“Since attending the conference I see a major improvement in Taylor’s health because I learned what questions to ask. I will forever be grateful for the opportunity and knowledge that I gained while attending the patient education conference.”
Taylor is now 13 and enjoys violin lessons and playing basketball for her school in Lakeland, Florida. Along with her active eighth-grade lifestyle, she works in her community raising awareness and funds for scleroderma. She feels thankful for the scholarship to attend the Scleroderma Foundation National Patient Education Conference, because it made it possible for her to “learn more about scleroderma from people going through what I’m going through instead of pamphlets from the doctors or reading about it on the Internet.”
In 2017, 55 individuals and families affected by scleroderma received scholarships to attend the Scleroderma Foundation’s National Patient Education Conference because of generous donors like you. Please help us make this opportunity of a lifetime available to even more individuals like Taylor and TaMetress in 2018. Your donation creates a chain of connections that help a scleroderma patient and their family for a lifetime.