As many of you know, my daughter is a warrior in the Myasthenia Gravis battle. She started with an abnormal school eye exam in 5th grade, which eventually led to her waking with what appeared to be a lazy eye. It got better after patching, came back a year later, and she was tentatively diagnosed with Ocular Myasthenia Gravis shortly after that. March of 2019, she developed a sinus infection that led to full-blown, generalized Myasthenia Gravis but she wasn’t officially diagnosed until November of 2019 – her 9th grade year. It was 4 years before she received an official diagnosis. This is due to racial disparities in health care.
If I’m being fair, part of this is due to the rarity of Myasthenia Gravis. 1 in 500,000 people are diagnosed every year and very few of those cases are in juveniles. Because Myasthenia affects the muscles and presents inconsistently in one person, let alone everyone else with Myasthenia, it is often misdiagnosed. For my daughter, we were originally told she just had “bad eyes” and needed glasses … until she woke up with a lazy eye, and further investigation was obviously needed. This is where “fair” stops and racial disparities in health care take over.
In the United States, your race, ethnicity, and financial status all have a baring on the quality of healthcare you will receive. Study after study has shown poor, Black, and People of Color receive a significantly lower quality of care. Black women have a greater chance of dying from pregnancy-related complications, poor individuals often have a harder time even getting in to be seen, and Black and non-Black People of Color all have issues with being taken seriously when expressing their concerns to their doctor once they make it in the exam room.
For us, we got a lot of run around. We were told we were dealing with a serious autoimmune disease, yet told we couldn’t get in to see a Neurologist until 6 months later. SIX MONTHS. If I’d not advocated for my child, we would have actually been left to wait that time. Once I pressed the issue, suddenly, they could get us in, in 2 weeks. To speed this story along, I’ll just tell you this game went on the duration of our time seeking care in Charlotte. In order to get in to see the doctor in a timely manner, I started making appointments through our Pediatrician who would call over to get us on the Neurologist’s schedule.
When my daughter presented signs of muscle weakness in her throat (she was unable to swallow solids without choking), her Pediatrician scheduled an appointment with a specialist who sent us straight to the emergency room, letting us know she was in Myasthenic crisis. We were in the ICU for 2 weeks prior to being transferred to a regular room for another week. During this time, they did a series of treatments that are done with Myasthenia Gravis, while finally testing for it to make the diagnosis official as well. While a series of people from the Neurologist office did come to check her daily vitals, not once did her actual Neurologist come to check on her.
When she was finally released, we made a follow up with the Neurologist office where we were told her test had come back negative for Myasthenia Gravis and there was nothing else they could do. Let me add, this was said with a very cavalier shoulder shrug. Because I’d done a TON of research by this time … remember, I’d had years already … I asked many questions about treatments and test that didn’t even seem to be considered. I was told we could go to Duke University to see a pediatric Neuromuscular Neurologist there or she could have us see an adult Neurologist here in Charlotte for a second opinion if we liked. I declined both and booked an appointment at Boston Children’s.
Our first appointment there was almost exactly a year ago, in July of 2019 – they got us in 2 weeks after leaving the hospital in Charlotte, and since that time, not only have they thoroughly tested her with things I’d only read about and pressed for with her Charlotte doctors, they’ve officially diagnosed her as seronegative, put her on medication that his assisted with many of her symptoms, and she’ll be having Thymectomy surgery next Friday.
If you’re wondering why it took so long for a diagnosis, it’s because they didn’t do the testing in Charlotte. Let me rephrase, they WOULDN’T do the testing. They mentioned several tests that COULD be done but didn’t “really” think it was Myasthenia because she wasn’t presenting the way THEY thought she should, so the most they were willing to do was the ice test. This is a test where they simply take a baggie of ice and place it on the eye for a period of time to see if there’s any change in a drooping lid. In other words, something I easily could have done at home without the extravagant price tag.
The National Academy of Medicine reported Black patients receive a lower quality of health care over White patients and this was 100% our experience. Without research and advocacy on my part, we’d still be waiting months for appointments and likely wouldn’t have a diagnosis. I don’t know what implicit biases her doctors held in Charlotte, but it took effort on my part to find the doctors who would listen to us and actually cared about finding out what was going on.
For anyone in a situation where you are needing care for yourself or a loved one, PLEASE advocate for yourself. If you don’t advocate for yourself, no one else will. Don’t be afraid to look outside of your city either. It is through the assistance of non-profit organizations like Angel Flight, and the generosity of JetBlue, that we’re able to take bi-monthly trips to Boston to see her Neuromuscular Neurologist. Where there is a will, there is a way.
How many people have found themselves having to advocate for a better quality of healthcare? Would you look outside of your state for assistance?
