Attendees at the Black Health Matters Harlem Week Health Summit learned how quickly a rare autoimmune condition can disrupt one’s plans and how challenging it can be to diagnose. Gwen Valencia, Associate Director of Global Patient Advocacy at Argenx, moderated a discussion in which two patient advocates shared their experiences of discovering, accepting, and managing their rare autoimmune conditions.
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Dawn’s Life Before Myasthenia Gravis
Dawn began by sharing what her day-to-day life was like before myasthenia gravis appeared in it. “Before my diagnosis, my life was great,” she said. She worked her way up through the ranks of her recruiting career after years of effort. “I was living my dream, working my dream job in corporate America. I finally got the salary level that I wanted.”
Her job didn’t just make her money; it offered fulfillment. She had the opportunity to explore the nation for work, something many people dream of. “My job involved corporate marketing and recruiting, so my job had me traveling all across the U.S, supporting 500 different offices,” she said. “I love to travel, so this was great for me.”
The First Symptoms Appeared Right Before a Mission Trip to South Africa
She was embarking on a personal journey when the symptoms first appeared. “I was about to take a mission trip to South Africa, and shortly before the trip. I ended up suffering an allergic reaction to something. But I didn’t think anything of it, and I definitely wasn’t going to cancel my trip to South Africa.” The fatigue associated with myasthenia gravis showed up during her trip.
“While I was in South Africa, I noticed that. I couldn’t do some of the things that my grandmothers were doing. They were outpacing me,” she said. “I just kept thinking, wait a minute, something is off. And even though I didn’t know what was exactly off, I just felt exhausted.”
During the Trip, She Had Balance Issues and Kept Falling
When her grannies had more energy than she did at the elephant sanctuary, it was clear this was not just letting lag. Fatigue soon became imbalanced walking and blurred vision. “I fell, and at first, I thought, maybe I tripped over a curb or something, because you know sometimes those things happen?
But then I kept falling, having more falls.”
Mel was a Retiree Who Had Corrective Surgery—afterward, the Symptoms of Chronic Inflammatory Demyelinating Polyneuropathy Began.
Mel was a retiree recovering from a surgery to correct issues stemming from an older injury. She spent her days with her husband, daughter, and their many cats when she wasn’t teaching at her dance studio. The surgery was not expected to uncover chronic inflammatory demyelinating polyneuropathy.
“About a month later after the surgery. I started feeling tingling and numbness in my hands and my arms,” she said. “My lower legs started going numb as well. I started to lose balance. I couldn’t walk. I started dropping things; I couldn’t type. I was an adjunct professor, so I had to do a lot of computer work, but I couldn’t type.”
After Dropping Things and Experiencing Numbness, Mel Called Her PCP, Who Immediately Ordered Tests
She consulted her primary care physician and expressed her concerns. “He referred me to a neurosurgeon who did the emergency MRI and the CT scan on my neck to make sure there wasn’t anything wrong with my neck from the neck surgery,” Mel continued. “From that point on, that’s when all the testing began.”
“My neurologist sat me down and listened to all of my symptoms,” said Mel. “He referred me to a different neurologist who specialized.”
She encountered medical bias. “The doctors that I saw were pretty dismissive, initially thinking that I was there for drugs.”
The Testing Process to Get to a Diagnosis Was Rigorous for Dawn and Mel.
Dawn had an advocate fight to get her the extensive testing she needed. “My partner was, like, wait a minute? She’s seen every specialist available. The one thing that she has not been tested for is MG. The neurologist thought about it for a moment and said, Oh well, yeah, let’s do it. Let’s test her for myasthenia gravis.”
The testing was not only challenging to obtain, but it was also painful. “I had the blood work done, and the painful nerve conduction study done, which I don’t recommend unless you absolutely need it. It’s excruciating, but it was very informative because it provided a conclusive diagnosis.”
Another neurologist confirmed it was CIPD for Mel. She was initially relieved, but it didn’t last for long after learning it was chronic.
Having a Rare Condition Requires a lot of Education.
They each learned about their conditions. Dawn knew that the job she loved was not compatible with what she needed. “Stress can make this condition worse. So I had to sit back and really think, ‘Okay.’ I’m in a career that I love. But it’s not loving me back because of all the stress.” The onset of myasthenia gravis is triggered by physical and emotional stress, according to the Journal of BMC Neurology.
Mel had to adjust as well. “Life changed, and I lost my studio because I had to close it because I couldn’t mentally and emotionally take care of it.”
Self-Advocacy is Critical
Autoimmune diseases often require extensive testing to diagnose accurately, scarce ones like the types Dawn and Mel were dealing with. They can present differently in different people and at various stages of life. Advocating for yourself or having a loved one advocate on your behalf helps in the process of finding answers.
“I was my biggest advocate for myself. I pushed for answers from the beginning,” she said. “When I was given that first set of blood work, I was told you had to wait 72 hours to get those results. And I was, like, no, I’m not. I called every day and asked for the results. I kept calling and calling and calling.”
“I think I saw about eight different specialists to try to figure out what was going on,” added Dawn. “Typically, they’re looking for MG in white women under 40 and white men over 60. So I did not fit into that category. So, the possibility of this being a diagnosis escaped eight specialists.”
Resources
Journal of BMC Neurology: Prospective study of stress, depression, and personality in myasthenia gravis relapses
