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Hailey-Hailey Disease

Skin Health | Last Active: May 12 12:45am | Replies (157)

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@dschoening

Try to keep area clean, but do not rub ot it shreds the skin. Wear loose clothing and use cool compresses to keep skin clean. Friction is your enemy.
I use Vaseline to keep skin from rubbing if I can't get to doctor or run out of my meds.

Sweating will make your skin tacky and tear. Stay cool during a flare up. Stay hydrated.
Do not shave the area, if possible use Lazer hair removal so stubble doesn't rub a lesion on corresponding area.

Stress is a trigger. I have had HH since I was 35. I'm now 60. First couple years was hard figuring out what it was and what I could do. I found a great dermatologist in Omaha that had treated many with HH. She is a God send.

Don't let your lesions get infected. Take it easy until they heal.
I hope you have a speedy recovery

Denise Schoening

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Replies to "Try to keep area clean, but do not rub ot it shreds the skin. Wear loose..."

I am in UK and this materialised in 2008 when I was 57. I am now 72. It started in the groin area but then took up residence under my arm pits. I am in one of the worst flares there at the monent. Last summer while in Italy my anal area became hot and rubbed from all the walking and this year because I have been trying to exercise due to a back problem i have broken out in the sacral area. Never had it there before. I take 4000 iu of D3 and 500mg of magnesium, K complex and a probiotic. I try hard not to go on antibiotics but use a red light on any suspicious spots and wash with Octenisan and dust with cornstarch. I have been referred to St. Thomas' rare disease unit in London and have an appt on 11/6/2024 where I am hoping they will prescribe low dose naltrexone. I am on a facebook site for this disease called Hailey Hailey Disease New Approaches. We are all about trying what works naturally first rather than harmful meds and steroid creams which tend to thin the skin. By all means join us we have over 3000 members worldwide. This disease is for life so managing for the long term with first do no harm protocols is the best we can hope for. Diet is key as sugar, wheat and anything processed does not help our condition. Since our immune system needs to be in tip top shape to deal with this it is important to have a healthy diet and keep weight down. Friction and sweat is my nemesis as it is for many others. Mepilex dressings have been a life saver for me. I wear them every day in groin area and they provide a good barrier between clothes and skin. This may not be life threatening but it sure as hell is life limiting. Sending healing vibes to you all.