At the age of 61, Bill Simeral was coaching downhill ski racing. He was in amazing shape, the guy who never got sick. His routine blood tests were abnormal, however, and he found out he had lupus. Then everything went haywire. Bill began experiencing muscle weakness and pain, and his very informed rheumatologist diagnosed him with polymyositis (PM). Shortly after that Bill lost forty pounds in a week and became quadriplegic as the disease attacked his muscle tissue. He ended up paralyzed in the hospital, on a feeding tube, and days away from liver failure. Everyone was worried he would die.
Excellent medical care and some luck stabilized him, and he began regaining the use of his limbs in the rehab hospital. Bill was grateful to find The Myositis Association (TMA), which helped him learn about his disease and advocate for himself within the medical system. “Don’t go it alone. Find people who have been on this journey, who have been there and done that. It helps immensely.”
Will you help people like Bill find support when their lives are turned upside down?
“The TMA patient conference and the Chicago support group were so helpful,” Bill said. “They taught me about medical self-advocacy and managing my own health care. I had a really unusual case, and given how rare myositis is, I asked members of the TMA Medical Advisory Board if they would advise my own doctors, which they did.”
Bill worked harder than he ever had to regain use of his body. “It’s important to mourn the death of the person you used to be in order to find out where you go from here.” First he defied the odds by walking, and eventually he worked up to skiing again.
“My support group helped me learn to trust myself and what is going on in my body. They also helped me navigate diagnosis and treatment hell – I am so grateful for them.” Now Bill goes back to the rehab hospital that nursed him back to health to pay it forward with other patients going through hard times. Bill has also served as co-leader of TMA’s Chicago Support Group for many years, a group that has been continually active for more than 30 years!
Please make a gift today to help people like Bill find support and pass it on to others.
Thank you for your generosity and being a vital part of our community during Myositis Awareness Month!
TMA hopes to raise $70,000 for Myositis Awareness Month – please help us reach our goal!