I never really thought of the label “rare disease patient”. Well, not in a way that would define me, at least. Two conditions in particular are ones I have now dealt with for more than ten years: Keratoconus and Dissecting Cellulitis of the Scalp.

My dissecting cellulitis of the scalp began around 2016, though it went misdiagnosed two different times up until 2025. I believe my Keratoconus started somewhere around 2014, but it was not officially diagnosed and confirmed until 2021. Trying to understand these diseases and what they meant for my life was overwhelming. Being on my fourth dermatologist has also been overwhelming. So much pain, so many sleepless nights, a loss of confidence, what seems like countless medications and therapies tested, and eventually grief for the “normal” that once existed for me before all of this.

In my eyes, if a condition appears on the NORD website, it is in fact a rare disease. For years, I found conflicting information about whether Keratoconus was considered rare, and I had never looked up dissecting cellulitis of the scalp (until recently). Seeing both listed on NORD’s website left me shocked. Not necessarily in a bad way, but in a way that made me feel, for the first time, surrounded by community. People who look like me. People who feel some of the same misunderstood pain.

I share all of this to say that as part of your community, I not only see it, I get it. You are not alone. We might be rare, but we are stronger together. Know that I will not stop fighting for equitable rare disease care right alongside you.

-Bryant