Allison Foss - living with a chronic disease

Allison Foss

Myasthenia Gravis – heard of it? Chances are you haven’t since the prevalence is about 1 in 5,000 people who have the chronic disease. Meet Allison Foss. She can tell you lots about MG, as it is commonly known.

Allison was diagnosed when she was only five years old. Her symptoms were double vision and crossed eyes, slurred speech and difficulty swallowing. The name comes from Greek and Latin words meaning “grave muscle weakness.” Muscles impacted by MG are those that receive signals from the brain to contract, meaning the muscles that are used to open or close your eyelids, smile, chew, swallow, hold your head erect, breathe, and move your arms and legs.

For Allison, the weakness is constrained to her face, speech and upper body. “When I am really tired,” Allison said, “I may have difficulty swallowing or in very bad incidences difficulty breathing. Heat and cold really affect me as does a lot of physical activity.”

The early years were especially difficult for Allison. She took high doses of Prednisone, a suggested treatment, from the time she was in second grade to eighth grade, she said, and was the fattest child in school as a result. Then when she went off the drug, she literally shrunk. In fourth grade, she also underwent surgery to remove her thymus gland, another suggested treatment option. Since MG is one of the numerous types of Muscular Dystrophy, Allison said, her parents tried to get her involved with others who had either MG or MD.

Allison Foss on the left with friends,
hoping to raise funds to support the MGA

“I served as the state ambassador for the MDA for Iowa,” she said, “and then went to summer camp with other kids who had MD.” Allison became one of “Jerry’s kids,” named for Jerry Lewis who worked tirelessly to publicize MD through a series of telethons. Though she never met the comedian and actor, she did serve as a poster child in two local Iowa campaigns for the Muscular Dystrophy Association.

For years, Allison was treated for having congenital MG. The turning point came when she had what is called a Myasthenic crisis her freshman year in college and ended up in a hospital. A neurologist suggested she visit Mayo Clinic for a more specific diagnosis and treatment options.

“I was devastated and embarrassed,” Allison said, “because here I was trying to be in college and had all this medical stuff hanging over my head. But it turns out going to Mayo Clinic was the best decision of my life.”

That’s because Allison met Dr. Andrew Engel, who she says is “kind of like the Godfather of Myasthenia Gravis.” He spends most of his time doing research on the disease, and thus only accepts a handful of patients. Allison said she feels blessed to be one of them. He diagnosed her with having MUsk Antibody Myasthenia Gravis, the rarest kind of MG. It requires a completely different type of treatment than other forms.

Now, Allison spends one morning a month at the University of Kansas Medical Center receiving Plasmapheresis treatments, a filtering process similar to dialysis that separates her plasma from her blood and replaces it with manmade plasma. It's the only treatment that allows her to function as best as she can, but it's a mind-boggling amount of almost $10,000 per treatment. She recently had to have the fistula port in her arm, used for the treatment, reconstructed because it had developed an aneurysm. An incredibly painful surgery, Allison said. Besides the monthly treatments, she returns to Mayo Clinic once a year, and has allowed her plasma and muscle tissue to be used for research purposes.

Living with a chronic illness can be overwhelming, controlling, and a negative experience. But not for Allison. “It impacts what I do but it doesn’t control me,” she said. “It shapes who I am, and it’s probably where my passion comes from to help others.”

Allison is a social worker with Johnson County Developmental Supports, working with youth and adults who have developmental disabilities. She helps them manage day-to-day activities, including employment, financial and medical needs. She serves on the board of directors for HopeBUILDERS, and is actively involved with the Greater Kansas City MGA Walk, Run and Roll fundraiser, the stewardship committee at Holy Cross, Gamma Phi Beta Alumnae of Iowa State University and P.E.O., a philanthropic organization for women.

Living with MG is difficult, but it is a normal for Allison. There is no cure, and it’s progressive. But Allison said she knows that feeling sorry for oneself isn’t healthy, so she doesn’t give in to that. Instead, she turns it around. “I take it and make it a positive thing in my life,” Allison said. “I have a passion for non-profits. I want to give back.”

Allison also works hard as her own advocate, and stands up to help others too. It is her hope that people would come to a greater understanding that there is a need for more accessible and affordable healthcare for everyone, because, as she said, illness can strike anyone at any time, often causing extreme financial hardship, as well as the added stress of fighting with insurance companies over coverage. Allison also has a strong faith, and prays that there will one day be a cure for MG.