World FSHD Day resolution introduced on Capitol Hill

After years of advocating for a cure for the rare disease that has limited his mobility, Mark Christman has made his way to Capitol Hill.

Christman, a retired attorney and board member of Trib Total Media, was diagnosed with facioscapulohumeral muscular dystrophy, or FSHD, in 1977 at age 16.

One in 8,000 individuals have this condition.

The disease gradually weakens the skeletal muscles and is named after the typical pattern that the condition follows at the onset — face muscles begin to weaken, then the shoulders, then the upper arms. Christman’s condition affects both his upper and lower body, and he must use a wheelchair. But Christman, of Whitehall, says that doesn’t bother him.

“It’s easier to be in a wheelchair because then everyone knows you have a problem,” Christman said. “Most people with FSHD are not as severely affected as I am. … They might have problems with fatigue or strength, but no one knows and they just think that they’re not working hard or they’re lazy.”

Christman has lived with FSHD for the better part of his life and, after years of feeling afraid to speak about it, has become a leading advocate for individuals with the disease. He started the Western Pennsylvania chapter of the FSHD Society in June 2018, which now has eight members. They advocate for a cure for FSHD, and Christman and the chapter’s work has now made its way to Washington, D.C.

Christman and his group collaborated with a lobbying firm and other legislators to introduce a bipartisan resolution calling for the designation of World FSHD Day on June 20 to recognize the roughly 41,000 Americans diagnosed with FSHD. The resolution, sponsored by Rep. Mike Kelly, R-Butler, and Rep. Debbie Dingell, D-Michigan, aims to raise awareness and encourage discussions about FSHD, improve the accuracy of diagnoses, fund research, develop new treatments and advance programs that support individuals with the disease.

Kelly says the legislation is a big step toward a larger goal.

“FSHD impacts nearly 1 million people worldwide, more people than the entire 16th Congressional District,” Kelly said. “The more awareness we can spread through legislation like this, we can make more progress on this critical issue. Ultimately, that allows us to work toward better patient care and patient outcomes for everyone living with FSHD.”

Christman’s role on Capitol Hill as they pushed for the resolution’s introduction was to talk about the effect FSHD has on his day-to-day life.

“My story and the impact of this disease on me is the very best way to communicate and spread awareness,” Christman said. “It just becomes easier and easier.”

Christman said that because individuals with FSHD are so often misdiagnosed, the resolution could help draw attention to the disease, raising the awareness of doctors and patients who are unable to determine the root of their skeletal deterioration. While FSHD is primarily hereditary, 30% of people have no family history of it.

Christman says that one of the three people who pushed for the resolution on Capitol Hill was diagnosed with FSHD in February after 10 years of not knowing what was wrong with her.

“We have needs that we need help with,” Christman said. “Once they take this step, then we open the door for future communications. We’ve created relationships.”