FAIRBORN – Community Park in Fairborn will be the home of “Step out, Cruise in to Cure Scleroderma” beginning at 10:30 a.m. Saturday. The event is to promote awareness of the autoimmune and incurable disease, and benefit the Scleroderma Foundation.
It will include a car show, walk/run, raffle and drawing, prizes, activities for children, food trucks and a DJ.
It is estimated that 300,000 people in the United States and 15,000 Ohio residents live with scleroderma, according to the foundation. Wilma Will, a local resident and member of the Scleroderma Foundation, is one of them.
“Scleroderma is a hard name, it’s a hard word, and it’s a harder disease,” Will said. “It’s a Greek work, and it literally means ‘hard skin.’ Many of the patients in the support group and the friends that I have, have it on their skin. It doesn’t sound like much, but they actually get horrible ulcers. The skin is hard and tight. One girl I know, her skin is like cement and it’s as cold as ice.”
She was diagnosed with Scleroderma in 1998, but believes that she started seeing symptoms up to seven years prior. She initially thought she had rashes and carpel tunnel, and began going through the appropriate testing for such throughout the 90s. It wasn’t until a hiking trip to California with her husband did she start to believe that she could be living with something else.
The couple was hiking together when he told her that she should stop because he noticed her breathing was different.
“My fingertips turned white and were cold, and they got purple and black,” Will said. “[Getting diagnosed] was really scary because I didn’t know what was going on. I had blood work done, and it said my oxygen level was low. The next day, there was a truck out front bringing oxygen. At that time I didn’t know anything about scleroderma, so I had to learn all about it … The worst thing was the oxygen, learning to live with it, and trying to find the right medication to slow the progression down.”
The disease can impact both internal and external organs, including the skin, lungs, heart, kidneys, esophagus and gastrointestinal tract. In Will’s case, her lungs, heart and digestive system are affected. She said the disease has slowed her down, and she is unable to practice some activities she once enjoyed. She can find herself winded after walking some distances.
“Scleroderma is a designer disease because everybody is different,” she said. “Hardly any of us have it exactly alike.”
She was placed in a medically-induced coma in 2004 after experiencing some issues. Her health began to decline in July, and she was not awoken until December. She had to take time to rehabilitate, and was necessitated to once again learn to walk, talk, breathe and eat on her own. Her doctors did not believe she would make it, and now tell her that she is a medical miracle.
“My husband kept saying ‘is she ever going to be mad at me,’ because I wasn’t in my right mind – I was pretty far out. That was all part of the medication in my system,” Will said. “It’s amazing and the doctors who hear the story and talk to me all call it a medical miracle – I defied medical science.”
Will and her brother, Jerry Walk, exercise in Kettering each Tuesday and Thursday for about 45 minutes at a time. She feels that the key to staying healthy is staying active.
“I think this (exercising) has been the thing that’s kept me as healthy as I am,” Will said. “I’m able to get up and go and do about everything. I’m certainly not the person I used to be, but my life is good. I’m getting to do pretty much everything I want to do … Anybody that can get out and exercises should do it, even if it’s chair exercises at home – I think that’s really what did it for me.”
Walk registration for the event will take place at 10:30 a.m. to 12 p.m. followed by the walk/run. “Solid Gold Oldies featuring Brian Brenner” will begin at 12:30 p.m. and a prize raffle at 1:30. Individuals wishing to show their cars can register between 11 a.m. and 2 p.m., with judging taking place at 2 p.m.; awards will be given a half-hour later and participants will cruise to Young Dairy at 3 p.m. Participants must donate a minimum of $20 to receive a T-shirt; those 12 and under can register for free online, and can receive a T-shirt for $5. All proceeds benefit the Scleroderma Foundation.
“My prognosis is this: scleroderma can be a progressive disease, in my case it is, and this time there’s no known cause or cure,” Will said. “There are some medications that can control some of the symptoms, but for right now, there is nothing that can slow down the progression … Hopefully when a breakthrough comes on the horizon, it’s not going to just help scleroderma patients, but it will help anyone with any type of autoimmune disease.”