Andrea Divis
In December 2018, Andrea Divis started feeling rundown. Despite being an active runner, she found herself needing multiple naps a day and experiencing bouts of poor coordination. Still, the 45-year-old looked past these changes because of her stressful professional life – until she could no longer ignore these symptoms.
“I went skiing right before New Year’s and my vision was really blurry. We were in a snowstorm at the top of the mountain, so I was able to play that off,” she said. “But when I took a selfie with my then fiancé in the lodge, the entire side of my face was drooping.”
This photo, combined with familial advice, prompted Andrea to visit her doctor. “The doctor says, well, there’s one thing I can do a blood test for, but I’ve never met anybody that has this condition. If that’s not what it is, then we’ll start looking elsewhere,” Andrea said. “The test came back really fast, my doctor called me, and he told me that I have myasthenia gravis (MG).”
Over the next three months, Andrea saw a neurological ophthalmologist, signed up for the national MG registry, sat through numerous additional tests, met with the neurology department, started medication and underwent a transcervical thymectomy. Each step further confirmed her MG diagnosis.
“I had zero time to process anything. I was always a Type A personality before this – I was running marathons, I was a district manager, in charge of fourteen locations, and I had three teenagers in my house,” she said. “I was just go go go, and then I was slapped in the face with this.”
Andrea took a little time off from intense activities, but she soon found her way back to the gym and began taking slow walks on the treadmill. This slowdown didn’t last long.
“I ran a half marathon about a week before I got my sight fully back and, by summertime, I was back to running half marathons. I also did a sixteen-mile hike that summer with some friends, and I completed one of my bucket list marathons in Hawaii that following December,” she said. “So I was still extremely active that first year, but I did start noticing some coordination issues. When I was doing a twenty-mile training run and those happened, I would have to pop some pills to help out. But nobody told me about the side effects of the medication I was on.”
Prednisone proved to be a particularly challenging medication for Andrea. While taking it, she struggled intensely with her emotions, oscillating between crying in the bathroom at work and fighting with her loved ones. While her care team helped stabilize these side effects by the end of the year, that didn’t mark the end of Andrea’s challenges.
“In January 2020, about a year after my MG onset, I started going downhill really fast. I would struggle to stay awake on the drive to work. I’d get to the store and not have the energy to lift my hands off the steering wheel. I started getting this brain fog and struggling to remember things, and my breathing became really shallow,” she said. “I told myself that I needed to get back to the neurologist because my current treatments were obviously not working.”
At her appointment, her doctor recommended she start some IV therapies. Her initial hope quickly turned to concern when, in May 2020, she had a particularly scary response.
“I couldn’t hold my head up and I couldn’t breathe so my fiancé called 911. They refused to come into the house because of COVID and my youngest son, who was 14 at the time, was yelling to them, ‘She has myasthenia gravis, she has myasthenia gravis, it’s not COVID,’” she said. “But they’re outside in our small cul-de-sac, dressed in full PPE, setting up their tents. And I was terrified for my family to see me like this.”
Andrea eventually learned that this episode was the result of a myasthenia gravis exacerbation. She ultimately worked her way through numerous different IV therapies, having either no reaction or a negative reaction to every single one over the next nine months.
“It was miserable. I felt like I was dying inside and I wasn’t getting any better. I went in to see the head of neurology and he told me that I’d have to accept this as my new normal, that all they could do is try and keep me stable,” she said. “My mental health disintegrated. I couldn’t sleep. I started seeing a therapist and I started taking some pills to try and regulate my emotions, but then I had to have a hysterectomy and that put me into medical menopause. So it was really ugly there for a while.”
This is when Andrea decided to throw herself into researching MG. She wanted to better understand her condition and to see what other treatment options might be available.
“First, I focused on potential side effects of clinical trials because I knew I would not be able to go through what I had already survived. And then I looked at trials available to me on the West Coast and I found one about twelve miles from the San Diego house where I grew up,” she said. “I asked my mom if I could crash at her house for the ten-week trial in Carlsbad, she said yes, and I started going to the clinic for their trial.”
This trial marked the first time since the onset of MG that Andrea found relief in medication.
“By the third injection, something clicked. It began to give me relief. It wasn’t perfect, but I woke up one morning and my vision had cleared up, I felt like I had some energy. It was really exciting,” she said. “I went on to the extended study and I really loved it because I got the best care of my life. They made sure I had everything I needed for the disease, but they also took other issues seriously. I complained of neck pain, they did an MRI, and they found I have bulging discs. My neurologist saw me walk, did an MRI of my back, and found that my back is trashed from the years of steroids.”
Ultimately, Andrea picked up and moved her family back to California to continue accessing this exemplary care. She has also continued to explore the MG treatments offered by clinical trials.
“I’m 90% sure that I’m on the placebo in this trial, but that’s okay. You need people in the placebo to see whether the treatment works or not,” she said. “But I did get COVID, I’ve had bad kidney stones, and I’ve had two surgeries. So MG just continues to throw things at me and, you know, it is what it is. I can’t control this disease, but I can control how I react to everything.”
Andrea has turned to the wider MG community in an effort to both expand her own support system and provide support to people who are in the early days of their MG diagnosis.
“I’m not a doctor, but I can tell people about my experiences. I can encourage other patients to ask questions and research on their own, and I try to teach them how to be an advocate for themselves, too. I really enjoy being able to do that,” she said. “So even though I don’t have an ongoing treatment that’s great for me, I have these new friendships, I still have my support system, and I’m exploring new hobbies like quilting. I refuse to identify myself through my disease. MG has controlled so much of my life, but I’m working to take it back.”
*Update: Andrea was part of the placebo group in her second clinical trial, but, as of the first week of July, she began to receive the treatment that was being studied. She has since experienced a notable improvement in her daily symptoms, and her enthusiasm has begun to return. “I can’t even imagine what the future looks like. My bucket list is being redefined daily.”
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