Q&A: Ansley Lesley
"Voice" Editor Christina Relacion recently talked with 10-year-old Ansley Lesley of Hartsville, S.C., and her mom, Mary Lesley, about living with the disease and winning the Scleroderma Foundation's first holiday greeting card art contest.
CR: When were you first diagnosed with scleroderma?
AL: I was diagnosed in April 2009 when I was eight. I have the CREST form of scleroderma, and Raynaud Phenomenon in my hands.
CR: How long did it take Ansley to be diagnosed?
ML: We were lucky. It only took about three weeks to get a diagnosis. There’s usually a six-month wait to see Dr. (Richard) Silver at the Medical University of South Carolina, but there was a cancellation, and we jumped on it. I am so glad that we did! Thankfully, there is no damage to her heart and lungs right now. I am so thankful she was diagnosed when she was.
CR: What’s the most difficult part of raising and caring for a child living with scleroderma?
ML: The hardest thing we have ever done is explain to a child that she has a disease with no cure.
CR: What’s the worst thing about living with scleroderma?
AL: I have to wear five or six layers of clothes when I play in the snow. I sometimes have problems with air conditioning and it can be worse in the winter. We have to keep a wide assortment of jackets and gloves in the car to prepare for trips out, like to the grocery store.
CR: Do you ever have to explain to your friends about your disease? What do you say to them?
AL: My friends normally ask why my fingers are purple. I just tell them about capillaries and how mine are different. I just turn purple sometimes from the Raynaud’s.
CR: I heard you really like swimming. How long have you been doing that and what’s your favorite stroke?
AL: I’ve been swimming about a year. My favorite stroke is breaststroke.
CR: Does scleroderma ever affect you when you swim?
AL: The swimming helps me but sometimes I get purple from the Raynaud’s so I sit in the hot tub to warm up. Most of the time, they keep me moving in the water that’s about 84 degrees.
CR: What do you want to be when you grow up?
AL: I want to be a marine biologist. But, Dr. Silver says I would have to wear a dry suit that means two wet suits on top of each other.
CR: What’s your favorite sea animal?
AL: I really enjoy sharks and sea turtles. Sharks are so different from other creature and that makes them really cool!
CR: What’s one really cool fact about sharks that you can tell me?
AL: Sharks can open their mouths up to four feet wide and they could swallow a small car! I would want to swim with them in a shark-proof cage in an aquarium.
CR: We had our first art contest last fall to select the drawing that would go on the Foundation’s holiday greeting card. How cool is it that we picked your watercolor scene as the winner?
AL: I think it’s awesome! I hope it will brighten someone’s day. My relatives have said they are so proud of me. Dr. Silver said he was very happy and proud of me, too. He even sent me a note on one of my own cards!
CR: Mary, what do you think about Ansley’s artwork being on a greeting card that was sent to hundreds of Foundation supporters?
ML: The card has boosted her confidence and her ability to do things. Before we got the news, she was feeling insecure. Then, when I told her, she just changed instantly from a child who struggled with confidence to, “Wow, I won.” It was a much-needed boost.
CR: What is one piece of advice that you would give a parent of a child with scleroderma?
ML: Seek out someone who specializes in pediatric rheumatology. Family doctors are good and we have a great family doctor but you need to build a medical team for your child. You need to be their advocate. You need a specialist you can approach and say, “I notice this, what do you recommend I do?” You need to be able to call them between appointments. We drive two hours to see Dr. Silver, usually every three months. It’s worth the drive.
The major medical centers like the Medical University of South Carolina and other teaching hospitals are the ones who are doing the research. They are aware of the newest technologies and treatments out there. We can say as parents what we notice, but we don’t know how that translates to the scleroderma.
CR: If you could, would you change Ansley having scleroderma?
ML: I don’t think I would. Shortly after her diagnosis, she said to me, “If this is God’s plan, I hope I can help other people.” She was the one comforting me. She’s handled this far better than I imagined. She helps me be strong for her. I just would like to get more information out there about juvenile scleroderma.
CR: What would you like to say to other people who are living with scleroderma?
AL: I want to encourage other people with scleroderma. You need to say that you are stronger than the disease, and you can get through it.