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Scleroderma Songwriter
By Alexis Ferro as told to Sondria Berman
Have you ever thought about what it would be like to grow up and become a songwriter? Ihave! My name’s Alexis Ferro and even thoughI’m only 9 years old, I’ve already written the lyrics to a few of my own songs! Songwriting is one of my favorite things to do and even though I’ve got plenty of time to figure out what I want to do when I grow up, I’m pretty sure this is it! Songwriting helps me to write down my thoughts and feelings, which has helped a lot ever since I was diagnosed with scleroderma just one year ago.
I’ll never forget when I first noticed a symptom of scleroderma. I had been bike riding with one of my friends and accidentally fell off my bike when I was trying to jump over a ramp. I fell down and bruised my stomach and at the time I thought the bruise was normal. But as weeks went by, the bruise I got never went away. Instead it began to spread all over, and my mom knew that something wasn’t right. That’s when my mom and I went to see my doctor. My doctor said I needed a skin biopsy and some other tests so they could figure out what I had. After the tests, my doctor said I had scleroderma.
When I first heard the word scleroderma I didn’t know what it would do to me and how it would affect my life. Before my diagnosis, I was always an active person. I played soccer, swam at the local pool, and had fun playing with my friends. I didn’t know if scleroderma would change all that for me, and I was really scared.
Scleroderma did change things for me, but it didn’t keep me from doing the things I loved. Swimming is still a part of my life even more so today, because swimming helps my flexibility and keeps my skin from feeling as stiff as it sometimes does. I still play soccer on occasion with my friends and am involved with my Girl Scouts troop, too. Medications have also helped me, even though I’ve sometimes had bad reactions to them or had to deal with their side effects.
Overall, my life with scleroderma is sometimes difficult but I just remind myself how strong I am. I never give up on what I want to do, even if it seems harder for me than it does for others. |
