Having a disease without a name
Greetings, I have what may be an autoinflammatory disorder vs an unlabeled rare condition that affects my barrier to inflammation. We found treatments that generally work and keep me off steroids. But mostly posting to wonder if anyone else has something rare that doesn’t actually have a name yet. My doctor said I could name it someday 😂 but really it’s hard. We have a treatment plan that generally works and pathophysiology but no clear diagnosis. I’m not complaining because years ago I had no treatment and lots of gaslighting so this is a preferable problem to have.
Hi,
!
I think you're in the same boat more than a few of our members have found themselves in over the years. As in, they sometimes go undiagnosed or misdiagnosed for years before finally having a name for what they are dealing with. And, heck, I say go ahead and name your condition until it gets an 'official' name or you are diagnosed with an already identified condition.
It IS hard to be a unicorn in the medical world. It's hard when you have to explain your condition to every new medical professional you meet and that you are pretty much required to be a self taught expert on your condition. That's really, really hard.
I thought you might find this information on diagnosing rare diseases interesting -- https://raredisease.net/diagnosis.
I am glad you are finally able to get some treatment and I hope it helps bring you some relief from your symptoms.
And, while you may have an as-of-now-unnamed-condition, please know you're not alone here and we're here for you!
Best, Erin, Team Member.
