"My antibodies are like little soldiers fighting my immune system.”
That’s how Deborah explains her rare autoimmune disease, myasthenia gravis.
Years ago, Deborah underwent neck surgery to help treat symptoms caused by Ehlers-Danlos syndrome, a rare, chronic illness she had since she was a teenager. After surgery, Deborah woke up and knew something wasn’t right. But it took four more years for doctors to take her symptoms seriously, and only after “her face began shutting down” did she receive a diagnosis of myasthenia gravis.
Deborah’s myasthenia gravis diagnosis came only three months before her wedding renewal. When she and her husband first got married, Deborah explains they weren’t able to have a nice ceremony because she was very ill as a result of her chronic illnesses. She promised her husband a renewal ceremony, which kept getting pushed back because of additional health complications.
“I had a perfect wedding dress ready to go, and my face was shutting down,” Deborah remembers.
Thankfully, Deborah and her husband were able to push forward with the renewal ceremony, and even performed a dance. As part of a contest, the couple received four free choreographed sessions if they agreed to post a video of their wedding dance on social media.
“At that time, we couldn’t find a video of a single woman dancing in a wheelchair on her wedding day,” Deborah explains. They were able to have their special dance and share it with the world.
Myasthenia gravis is a rare, neuromuscular, autoimmune condition that causes weakness and fatigue in the muscles that control voluntary movement and breathing. Additionally, some people, like Deborah, may experience cognitive and verbal issues.
These symptoms are especially hard for her to deal with, as she has been a public speaker for the last three decades. “To not be able to get my verbiage out is so challenging. I’ll know what I want to say, but I can’t get my mouth to move,” Deborah says. “I lost a lot of confidence in my speaking.”
Currently, Deborah is on an infusion and chemo-based drug to help ease her symptoms. The chemo-based drug, however, causes her to be immunocompromised. This side effect makes Deborah unhappy because she’s always loved volunteering for her kid’s cub scout programs and at their schools, which is now unsafe for her because of her weakened immune system. “I was more upset about that than anything else,” Deborah acknowledges.
Deborah says she has been struggling to find the silver lining in her myasthenia gravis diagnosis. But lately, she’s been thinking it may be her increased involvement in patient advocacy. She particularly loves joining rare disease and chronic illness discussions on Clubhouse, a new social networking app where people from around the world come together to talk, listen and learn.
Her primary advocacy initiative, however, is her “positive intention” jewelry. She creates rare disease-themed handmade jewelry to fundraise both for her advocacy work and numerous rare disease organizations. Much of her jewelry involves zebras, the symbol for both the Ehlers-Danlos and rare disease communities, but she also creates customized pieces using disease-specific awareness colors.
Deborah says her creations are a big part of her mindfulness practice and is a great way to give back to the rare disease and chronic illness communities: “They are created by a zebra for zebras.” She hopes her jewelry helps patients take ownership of their conditions.
Deborah’s advocacy doesn’t stop there. She’s also an Ambassador for AllStripes’ myasthenia gravis research program. “I really believe we need to connect the researchers and scientists with the rare disease community,” she explains. She wants researchers to understand what day-to-day life is like for people impacted by myasthenia gravis: “We all have a story to tell.”