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How old were you when you were diagnosed?

Getting a correct diagnosis can take so long. How old were you when you were officially diagnosed with hidradenitis suppurativa?

  1. Still waiting for an official diagnosis (they keep saying it’s foliculitus) but I’ve had bad flare ups since I was around 10. I’m 25 now and have been going to the doctors with ‘acne’ issues since I was about 13.

    1. wow! What a journey you have been on. I'm glad you have found this community and that we can help you in some way! Sending good vibes your way- Isela Nataly (Team Member)

    2. Hello! I'm not sure if this has been discussed, but have you considered changing the type of doctor you are visiting? I don't know anything about your area or insurance, but not just dermatologists but surgeons also deal with HS. And if you see a surgeon first, maybe they can reverse refer you to a doctor who is knowledgeable about HS. Also, I wrote about doctor shopping recently because I do it often since HS isn't my only condition. Maybe something mentioned will be helpful? Wishing you the very best of care! ~Chelsea (Team Member)

  2. I diagnosed myself 10 years ago, but have only been officially diagnosed and treated 2 years ago. I’ve been dealing with HS since my early 20s. I’m in my late 50s.

    1. Hi Juli! We hear from so many like you who have suffered for decades and have only recently been able to start treatment. Thank you for stepping forward. Sending you some extra hugs! ~Chelsea (Team Member)

  3. I first started having symptoms in my late teens back in the 80's. My gynocologist told me that they were ingrown hairs and told me to use antibacterial soap and that was that. Living in New England, thankfully, I didnt have too many incidents over the years, though I had enough, including one surgical removal but still no actual diagnosis . I moved to Florida 4 years ago and of course with the heat and humidity things got much worse. I finally got an actual diagnosis at age 46( so it took about 30 years to have an actual name for it) and it has been a nightmare ever since. (Incidentally I do have other auto immune and inflammatory disorders besides the HS, so I had already been taking Methotrexate for years) Now I take Humira, Doxycycline, occasionally prednisone, as well as using multiple topical ointments, lotions and powders. Seriously considering moving back up North away from the heat and humidity.

    1. it really is sad. I am also an autoimmune soup( that is a cute term🤣) I have Sarcoidosis, fibromyalgia, Occasionally I get Lupus antibodies and any number of other craziness that leaves doctors all scratching their heads. It took them years to find my Sarcoidosis by accident. Back when the docs blamed ingrown hairs for the HS, I actually had a lot more hair than I do now. These days though I still have hair on my head( though not nearly as much as I once had) I really don't seem to grow hair anyplace else. I have not had to shave my legs or under arms or other places for a good 5 or more years though that is another thing that nobody has answers for ( they blame it on getting older though I really am not sure that is true, every single one of my hormone levels are very low but none of my doctors actually know what to do with that either.) Thankfully I have a lot of hair on my head to start with, but I clog drains like crazy and it gets everywhere... In the carpets, all over my clothes, in my car and even in dinner when I am cooking( yuck). It looks like i have more than I do because of the texture. I try to rest when I can because my body doesn't give me a choice. It says " you will nap now!" And I obey. Lol. Wishing you a Happy Easter weekend🐇

    2. I think our issue right now for testing is that we are stuck in this weird space where everything is either 70 years old, or we are using brand new genetic tests to try to figure out the autoimmune stuff, and we don't have anything in between. The natural conclusion then is that we don't know if anything is 100% accurate because one side is vague old science, and the other side is new science that we are just becoming acquainted with. As far as hair loss goes with autoimmune disease: I have had alopecia in some sort of form since age 3, and lost all of it at age 29. I don't even grow eyebrows and eyelashes. It makes for embarrassing times when I have a runny nose - there is no stopping it! But everything documented for hair loss as it's related to every other autoimmune disease is vague, We know you lose handfuls of hair with autoimmune diseases. We don't know why or how to stop it. And sadly, since these conditions affect a larger number of women than they do men (although in reality the number is likely higher), the issues are largely ignored. My hope is that focus will turn to women's issues and we will find better medications for HS and autoimmune diseases, and maybe even cures - finally! Wishing you a happy and healthy holiday weekend as well, Dawn!

  4. I was diagnosed at 16 but I had my first simptoms at 11-12. Now I'm 20.

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