Hidradenitis Suppurativa Support Group

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...

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Wisdumb 05/19/2017

Hey! I'm Laura and I've just joined this group. I'm so excited to see some HS support groups popping up. I've had it for 20 years and as I'm sure you know, the world has been relatively silent about this disease until fairly recently. I'm looking forward to sharing my experiences, and helping others manage better understand HS through personal trail and many errors! Please reach out, hopefully we can help each other !

Bmars 05/20/2017

Hello Laura My name is Brian, I have had H.S for over twenty years myself so I finally wrote a book and finished it two days ago! I figured if i could help people avoid my downfalls it will save them a lot of heartache and money.
https://www.amazon.com/dp/B071LHD5VN/ref=nav_timeline_asin?_encoding=UTF8&psc=1

GrannyGran 05/26/2017

Hi Laura! I have had this for longer than I care to remember. In the middle of a painful 'break out' at the moment. Have tired lots of stuff that haven't worked. Prayerfully, I will find something that works soon!

LadyBird 06/02/2017

Hi Laura! I've had HS for close to 20 years as well, but only recently diagnosed. I'm finding out through trail and error about what works and doesn't work. I'm hoping to write my experience on here as well soon. (I just joined today)

Wisdumb 06/02/2017

Thanks to all who replied. It's so nice to have a group who "gets" it. I just developed a new legion under my arm, right at my bra band line. Ugh. Unscathed new skin too! I'm using wet warm compresses to help with the pain and to try to get it to drain. At this point it's old hat, or at least I feel it should be. But the new ones are a reminder that this will keep going on.

Devastated93 06/04/2017

I was just diagnosed with this. I'm so scared I don't know what to do. I'm 50 years old and single. Wondering if I should be selling my house..will I become unable to work? Just very depressed and frightened.

Wisdumb 06/05/2017

Ok. First take a deep breath. Don't do anything out of fear or make any big decisions. This is a manageable disease. I promise. It hurts, it sucks, you will feel helpless at times, but just remember you are not. My suggestion would be get to a good dermatologist, find someone you're comfortable with. The relationship you have with your doctor is important. Don't get frustrated if that process takes some time. It will happen. Secondly find a therapist/psychologist. It's so important to set yourself up with a solid support system. Include your family if possible. If not, that's ok too. This is not a terminal disease. If you're having flare ups, get to the doctor to control them. I have done a ton of research on my own
A lot of managing this is trial and error. And that's ok. Find what works for you. If you need advice, I'm here. Most importantly, love yourself. Give yourself some time to process, get into therapy to help with the anxiety and get to a derm. They know more now than they did 20 years ago. Please feel free to reach out. It's going to be ok. ❤

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