“In 2014, my life changed forever,” said 13-year-old Taylor Brown of Lakeland, Florida.
That was the year Taylor was diagnosed with en coup de sabre, an unusual form of linear scleroderma. Her mother, TaMetress Reed, had observed symptoms when Taylor was only two years old, but doctors couldn’t explain them.
“I was having headaches, a lot of nose bleeds, joint pain in my knees,” Taylor remembered. All of these symptoms can have multiple causes, which is one reason why scleroderma is difficult to diagnose. Eventually, her pediatrician referred Taylor to a rheumatologist.
Taylor not only had to deal with the pain from the scar on her face, she also had to cope with bullying at school.
“At first I cried, and then I blocked out the negativity,” Brown recalled. “I learned that you have to stay strong, and positive, and be healthy.”
Taylor is maintaining her active eighth grade lifestyle as a basketball player at the Rochelle School of the Arts in Lakeland and taking violin lessons.
She has also taken action on many fronts against scleroderma. She fundraised through Facebook during Awareness Month [June] to fund research. She reached out to build awareness of scleroderma in her community, including a presentation at her church, Jerusalem Missionary Baptist Church. And, she’s been learning about her disease. In July 2017, she and her mother attended the foundation’s National Patient Education Conference.
Taylor is an unstoppable force. This October, she participated in a local fashion show, the Meeting of the Minds fashion designer showcase. Every year the group donates proceeds to a different charity.
“Doctors say that there is no cure,” said Taylor. “I am determined to fight back and stay healthy.”
