The day after my 20th birthday, I was hospitalized with severe inflammation and my panic was rising. I was sick for over a year by that point with an illness that caused me to have anaphylaxis-like symptoms that caused my oxygen saturation level to fall. My vision also became blurry when exposed to triggers like cold or stress. A doctor diagnosed me with systemic urticarial vasculitis, an illness that I had never heard of in my life.
Vasculitis causes people’s blood vessels to become inflamed. There are many different types of vasculitis and the form that a person is diagnosed with generally depends on which organs are affected. Certain types of vasculitis are more prevalent for people in certain age groups, sexes, and ethnicities. The type of vasculitis that I have starts by causing the blood vessels in a person’s skin to become inflamed, but it can also lead to kidney or lung problems.
After I received my diagnosis of systemic urticarial vasculitis, I spent most of my time on bed rest trying to search for anything that could provide physical relief. I read through studies to see if there were better alternatives to prednisone, a steroid that I had been prescribed and have been on and off of for the past few years, or if there is a cure for vasculitis. I could not find anything that made me feel hopeful, and the care that I received after my diagnosis did not help that matter. During visits to the Emergency Room, where my inflammation levels caused me to have trouble breathing and vomit, I could not get the help I needed. A few doctors admitted they’d Googled my illness, and didn’t know how to help me.
A few doctors admitted they’d Googled my illness, and didn’t know how to help me.
But the lack of awareness about my illness is now changing. Today, two years after my diagnosis, the media is reporting on vasculitis as one of the complications that children who get coronavirus may face: namely, Kawasaki disease, a form of vasculitis which more frequently affects children under the age of five of Asian or Pacific Island descent.
As I read about scientists rushing to find a vaccine and doctors fighting COVID-19’s most severe complications, I was horrified… but a part of me started to hope. Over the years, I have told more friends than I can count: “I wouldn’t wish vasculitis and its debilitating flares on my worst enemy.” But as terrible as the inflammatory syndrome that children are experiencing as a complication from the coronavirus is, it is grabbing people’s attention in a way that many rare and serious chronic illnesses do not. And the advances that come from treating it may also, in time, benefit people like me.
As a person with a rare disease, my frustrations about the lack of research and treatment options are definitely not unique. I spent over a year trying to get an answer for what was making me sick, and when I finally got it, I was left with more questions than answers about my health. Researchers and doctors also seemed like they weren’t interested in my disease, because my condition is not common or easily managed.
If we’re all going to have to live through this, I want as much good to come out of it at the end of the day as possible—for everyone.
Life with vasculitis is hard, and trying to push through my symptoms for another day seems impossible sometimes. What keeps me going is hope: the chance that, someday, my vasculitis will be controlled to the point where it is a condition I have, but not something that controls me. And for all of the horrible damage it’s doing to people around the world, it’s possible that the attention vasculitis is getting as a COVID-19 symptom might be what gets us there. And even if not, people are, at least, now more aware of how vasculitis and vasculitis-like syndromes can impact people’s health.
I hope that we are able to control the coronavirus and return back to a sense of normalcy. I also want to return to feeling how I did before I got sick with vasculitis, and I now have more hope that will happen. Would I rather coronavirus had never sprung up, to kill 100,000 people and counting in just America alone, and make millions of people around the world? Of course. But if we’re all going to have to live through this, I want as much good to come out of it at the end of the day as possible—for everyone.