David Quay was in his early 50’s and working at Home Depot when he noticed climbing ladders was becoming harder. Soon after, he began falling down without warning. “One time I fell backwards in the hall and put my head right through the drywall.”
He was diagnosed with inclusion body myositis (IBM) 12 years ago.
“I went online and found The Myositis Association (TMA) immediately. I didn’t want to reinvent the wheel in figuring out how to live with this disease I had never heard of.”
“I met people at TMA’s International Annual Patient Conference who were proof that you don’t have to stop living just because you have myositis.” David also met the doctor responsible for a clinical trial investigating a drug with the potential to help IBM patients, and he enrolled in the trial.
“Without the information and connections we gained through TMA, I would be in a nursing home right now”, David said. His wife Donna added, “It’s so nice to know we aren’t alone. Both David and I have benefited so much from support from people who really understand.”
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Hello my husband was diagnosed in 2010 IBM. Usual progression has occurred.
He has just been diagnosed with ILD. Is there a correlation ,please.
Hello Joelle, this is a good question to bring to one of our Ask the Doc webinars. You can find dates for these monthly sessions and registration information on our calendar: https://www.myositis.org/calendar/
What is the trial drug. I’ve been told by my doctors that there is no drug.
Nancy, It’s true that there is currently no drug treatment available for IBM. There are, however, two drugs in clinical trials being tested for IBM. One is sirolimus, the other is known as ABC008. It may be several years before we know whether these treatments are successful and possibly available to patients.