Do you resonate with the term 'rare disease' ?

Yes and no. It’s a “rare disease” because people rarely talk about it but I think it’s a lot more common than we think. Plenty of people could have HS without even realising it due to misdiagnosis or fear of seeking help due to embarrassment. I feel it’s rare to find others to talk about it but the disease in itself isn’t so rare.

Hi, - thanks so much for your thoughtful response. This is such a great perspective, and something I hadn't thought of! And it's so true - how people respond to treatment for HS is so different for everyone. I'm so glad to hear you are in remission and have found a combination of diet changes and holistic approaches that work for you! 💜 -Rachel

I don't consider it a "Disease", I consider it a rare "Disorder". This disorder is linked to so many other auto immune diseases, that I feel it is a disorder. I have lived with disorder for over 42 years, and I have went through the gammut of treatments and surgeries to get a control of this. Like diabetes, both one and two, everyone responds to this disorder differently. I truly believe that there are various forms of this disorder and the treatments range from successful to failure depending on the variant of this disorder one has. With me, I am finally at a point in my life where I can actually say I am in remission due to diet change and treating my flare ups, when I do have them, with a holistic approach.