Jodi Follina Rose
I have dealt with HS since around the age of 30, but was not diagnosed until the age of 46. Until that point the only people who knew about it was my husband and my mother. When the dermatologist told me what it was, he followed it with a string of sentences that were not only false, and proved detrimental to my physical health when I wound up septic just three weeks after my diagnosis. I was terrified, but determined to figure this disease that affects my groin and underarms.
I have found an amazing medical team at the University of Minnesota with and HS specialist who teams with a rheumatologist, working together to treat both HS and other co-morbidities and several autoimmune diseases. Because my HS is hormone related, I am currently on Spironolactone, which is controlling it fairly well, keeping me at a stage one. The likelihood of starting Humira in the near future is strong because it helps with several diseases I live with as well as HS.
Having a background in sociology and spending my early career working in a library, once diagnosed, I gathered myself and did what I do best - research. I also reached out for support in Facebook Groups, several of which I now help admin, and became very active in dispelling the myths and outdated medical information, as well as discouraging some of the more dangerous self-care practices that are common among those with HS. I believe in arming myself and others with as much factual, up-to-date information as possible. Advocacy has quickly become a passion.