Date

My Article

Cassandra Maniak

My name is Cassandra Maniak; I’m 15 years old, and am in the 10th grade. My favorite subjects in school are math and science, but I also love the arts! In fact, all my life I’ve loved to act, sing, and dance on stage. I also enjoy working behind the scenes and am planning to study to become a theatrical engineer. I

Erica and Emily Mentzer

My name is Erica and I am in the 6th grade. My sister, Emily, and I are identical twins and have localized linear scleroderma. I guess
that makes us a rare duo!

My name is Emily and I am also in the 6th grade. As my sister Erica mentioned, I was diagnosed shortly after her with the same form of scleroderma. I suppose our genetics wouldn’t have it any other way!

"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."

"One of my favorite things to do is write. I’m proud to say I’ve kept a journal since the 5th grade. Writing helps me a lot because I have scleroderma, and writing about how I feel makes me feel better."

"I began my athletic career by signing up to be a cheerleader for my brother’s youth football team. Soon after that, I joined
basketball, volleyball, and t-ball teams. By the sixth grade, I had developed a true
passion for a fourth game: softball. Throughout my high school years I continued to play softball, as well as volleyball and basketball, and attended various state
championships for each. It seemed as though nothing could or ever would keep me from my place on the field and court."

"One morning I realized I could not straighten my middle finger. I tried but nothing made it better. My mom made me an appointment with an orthopedic doctor after two weeks. The day I was supposed to go, I woke up and was able to straighten
my finger, but not my elbow, which hurt really badly. Later that day, the doctor did X-rays but couldn’t give me an explanation for my pains. They told me to go to my pediatrician. My pediatrician did blood work and said that my immune system (which keeps you healthy) wasn’t normal."

"I was a little scared when they first told me that I had systemic sclerosis and then Sjögren’s syndrome because I didn’t know what would happen to me. Having experienced both diseases for a year now, I can see how some things in my life have changed, and others have stayed the same."

Khloe Lewis

"Having scleroderma is a challenge, but I don’t let it change my life. My mom says I deal with it 'Like water off a duck’s back.' I’m really open with my friends and family about it. I do get sad sometimes, but I try not to."

Alivia Watson

"I was diagnosed with Raynaud’s when I was 4. My doctor told my mom and dad that I may have scleroderma. He kept a good watch on me for three years, and when I was 7 he told my mom and dad that I had systemic sclerosis."

"My experience with scleroderma began more than a year ago when I suddenly would get weak, my body ached, and my vision was getting worse."

"Kids aren’t supposed to get this disease—it’s for grownups, mostly women like my mom’s age."