Many years ago, I became one of the first people to be diagnosed with an ultra-rare vasculitis syndrome, a dangerous inflammation of the small blood vessels. My disease is so rare that I had a much better chance of winning the lottery, but instead, I ended up sick.
The story of how I was finally diagnosed is as unlikely as my disease, but it also speaks to a few broader truths about the importance of understanding the patient journey.
Soothing the symptoms
When I was in my 30s, I woke up one morning with a giant red welt on my thigh. I assumed it was from some unknown irritant, or perhaps my husband had kicked me in his sleep. But two days later, my coworker looked at me with alarm, interrupting our meeting to tell me, “Carolyn, something’s going on with your face!” In the restroom, I found that my cheek and lower lip had ballooned to elephantine proportions. I went immediately to the emergency room, where it was confirmed that I had angioedema—but no one could offer an explanation as to why.
For the next six months, I experienced horrific, painful welts all over my body, which would come and go at random. As I became more and more convinced that something was seriously wrong with me, I saw doctor after doctor. While all of them treated my symptoms, prescribing soothing creams for the welts and numbing drugs for the pain, none of them tried to determine the underlying cause.
Although several physicians suggested my welts were likely due to a household allergy, they also declined to give me an allergy panel. One doctor bluntly announced that they’d never be able to figure it out, so the best I could hope for was learning to cope with the symptoms. It wasn’t going to kill me, after all.
To learn how Carolyn finally got diagnosed—and how that changed her perspective on patient access—read the full story at PharmaVoice.
