UpdatedJune 25, 2020 · 3 minute read
Randy won’t let inclusion body myositis (IBM), a disease that is causing the degeneration of his muscles, reduce his life.
By Catherine Cooke
At the age of 51, Randy started to notice a decline in his strength and stability. Working on new flooring in his house, he had a difficult time getting up off the ground on his own. Hiking became challenging. At the gym, instead of adding more weight onto the leg press, he was having to remove weight. Then weights started falling out of his left hand as he was weightlifting – his grip was weakening.
Thankfully, Randy had something that many rare disease patients don’t have: a neurologist who was able to accurately diagnose him. After a thorough exam and a muscle biopsy, he learned he had IBM on his 54th birthday.
With IBM, a specific type of a broader rare disease called myositis, the body’s immune system turns on itself and starts attacking the muscles. Over time, muscles in the esophagus, wrists, fingers and legs progressively weaken. Randy explained that “IBM itself is not deadly, but the side effects can be deadly. Pneumonia is common. The other big threat is that because your legs are so unstable, you can fall.”
Unfortunately, there is no treatment for IBM.
Randy hit another obstacle many rare disease patients face when he talked to his employer about his disease. He was asked to get an official report from the doctor that would make clear what kind of accommodations he needed in the work place.
His doctor suggested a walker, no more than 5 minutes on his feet at a time, and no lifting anything. His company used the doctor’s recommendation list as a reason to let Randy go. He was devastated.
“I put 110% into my job. I was very honest and trusting,” he said, and he thought his employer would make adjustments for him to help him continue executing his work. “The HR perspective was looking at me like a liability risk… They came back and told me that they can’t keep me.”
Since then, Randy has taken on a new role. His life, once devoted to his work, is now devoted to supporting others with myositis. He is the head of a myositis support group through the Myositis Association with around 40 myositis patients in the Charlotte, N.C., area.
Once a quarter, he coordinates group meetings, but often times people call him for support between meetings. He also sends out regular emails that kick off a group chain where the group updates each other on how they’re doing.
“The support groups are fantastic when you have this condition. We’re teaching the doctors. They have no idea,” Randy said.
Another way he is helping others with myositis is by signing up with AllStripes, a platform that centralizes patients’ medical data and makes it easy for patients and families to contribute to drug research from home.
“What AllStripes is doing made so much sense: actually looking at all of your background. It’s a one-stop shop for all your records. They’re also working with other pharmacies and medical professionals to see if there’s any [clinical trials] that could be open to us.”
Randy will contribute to research in any way he can to help others with IBM. Recently, researchers found that his T-cells were “supercharged above normal human body levels,” which they were very excited to look more into as a potential lead. But don’t worry, he’s not letting this new information go to his head too much.
“If anyone wants my autograph, you can get it!” Randy jokes. His sense of humor is another way he’s holding on to the important things in life.
If you have been diagnosed with IBM and are interested in contributing to research from home, learn more at allstripes.com/ibm.