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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Devastated93 09/18/2017

There doesn't seem to be many current members on here and no one to really talk to. Does anyone know of any other more active support groups?

Thanks.

LelaWms 09/18/2017

Hope for HS is in FB. I'm not a social media type person so I have not looked into it but have read about it. It is confidential.

pcar 09/19/2017

Hi Devastated93- I just found this group today- still learning the way to post. I saw your post titled "depressed". I would like you and everyone else thinking this way to realize there is someone out there for everyone, whether you have HS or not. HS sucks but especially since you can go into remission (for lack of a better word) I'd encourage everyone to not think of it as a permanent situation. I also no longer apologize for things that aren't my fault. HS is a very old, very underdiscussed condition. I've recently had HS flaring up but am taking steps to calm things down.

crystlm304 09/21/2017

Hey! I created and run the largest HS support group on the internet. We currently have over 11,000 active members from all over the world... It's on Facebook.... Hidradenitis Suppurativa Support Group. .. It will be at the top of the list on FB.... I also created hs support groups for states and countries... for example search in Facebook... Hidradenitis Suppurativa- Georgia

Hope this helps you and I look forward to you joining :)

Devastated93 09/21/2017

I don't like doing facebook groups because I'm afraid my friends will see something. I would be more devastated if that happened.. :( I can't seem to figure out what my triggers are. Can't eat anything I like, can't drink a beer, can't sweat, can't shave, and can't stop crying. What a life.

pcar 09/23/2017

Devastated93- Why can't you eat anything you like, or drink beer and sweat?

Devastated93 10/02/2017

pcar, I've been told not to eat dairy, yeast containing products, which includes alcohol, and that sweating is a huge trigger. Mayo clinic lists the foods..... So basically, don't do anything I enjoy.

Devastated93 10/02/2017

I will never be with anyone again. No way. I feel like a part of my life has ended. A part of me has died. No hope for happy ever after anymore. Thank god for my kids. They are the only reason I am here today.

ajills 10/05/2017

Deva, I hope today is a better day for you!!!
I've had HS since I was a young adult. I'm now almost 60 and believe me I FEEL YOUR PAIN!
My sister and my daughter also suffer from this horrible disease, but we all agree I have the lion's share of trouble.
I have noticed since I went "low carb" last fall, my outbreaks are much fewer and easier to control. I still wash every day with my 10% benzoil peroxide soap, and take special care to keep as clean as I can.
I hope you're having a better day. You can still be happy ever after! Keep the faith!

Preppy_g 10/05/2017

Im sorry to hear that.. well devastated93!!!
have you tried Humaira ...????
I am recently on it and i have seen a difference and use hibiclens?!?!?!

Destinee22 11/21/2017

Hey, I'm trying to get the word out about what I just discovered! Drinking a TON of Cranberry juice every single day stopped the reoccurring cycle of my HS. I am no longer in pain and I feel great. I don't know if this will work for you and I'm not saying this is not a cure but it wouldn't hurt to give it a try.

P.S When I stopped drinking the Cranberry Juice, the HS started back up again so I started drinking it again and it stopped

I really hope this helps :)

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