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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Daughter with Down Syndrome has HS

hannahsmom54
hannahsmom54
My 15 year old daughter who has Down Syndrome has been diagnosed with HS. I don't know what to do for her. The dermatologist I took her to gave us some topical stuff that doesn't seem to help. Any ideas? I think I'm going to a new dermatologist to see if I can get more info. I would appreciate any input.
lula73
lula73
So sorry this is happening to your daughter! Read through the many posts here and on other sites--not necessarily all aimed at medical doctor remedies. There may be a food trigger--check out primalgirl.com and/or Rob Wolff's blogs on HS. I didn't buy into the whole idea of these food triggers until I had tried everything the doc had recommended/prescribed with no relief & I was miserable and desperate for answers. Turned out my trigger was gluten. I figured it out from doing a modified version of the AI protocol elimination diet--basically you completely eliminate common trigger foods from your diet for 3 weeks to see if there's any change. What I'm trying to say is there is hope - Good luck to you!
respectful
respectful
Best of luck with a dermatologist. My dermatologist knows diddly-squat about H.S. You may have to see a different slew of doctors before getting the right answers. Everyone has their own ideas. No luck on my side that is for sure. I hope you find someone to help you.
Take Care.
deleted_user
deleted_user
" I didn't buy into the whole idea of these food triggers until I had tried everything the doc had recommended/prescribed with no relief & I was miserable and desperate for answers."

I've had HS for 13 years or so - don't keep track.. :)

I think that many people (myself included) think there must be 'triggers' since it can vary in severity quite dramatically, for seemingly no reason.

Stress is most certainly a trigger - I have teenagers, I can pretty much guarantee stress is a trigger, lol.

Diet I think is also. For me - deep fried foods seem to make it the worst the fastest. Anything deep fried in oils. I'm really of the belief that it's mostly these 'newer' and supposedly 'more healthy' oils they use, perhaps if I used something at home - more natural or more traditional I might not have issues; but I find just eliminating deep fried foods has it's benefits :)

Many others mention gluten or sugars as well - you can find people posting about that here as well.

Personally - I tried eliminating certain things from my diet one at a time - process of elimination. Oh - also processed foods seem to agitate mine. More along the lines of hot dogs, and other heavily processed stuff.

Trying different dermatologists can certainly be helpful too.

You can get Benzoyl Peroxide wash over the counter - it's just an acne medicine. The 10% is what I use, it's not a cure by any means, but it's good at helping to eliminate bacteria on the skin. IMO, the less bacteria the better. It does seem to help - some.

Perhaps overall a good diet and exercise are very helpful. Exercise has helped me more than anything in my opinion. Sweating seems to be good for me, *as long as I wash off ASAP after exercising* - I make sure to not leave sweat on my skin very long.

Another thing I find that will annoy HS is wearing the same clothes for too long, particularly if I'm having a flare up. I change clothing often - I just use less detergent and got a HE washer to minimize the cost of that for me.