Hailey-Hailey Disease

I also have Hh and have the worse flarup at the minute,please help me

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

I have has HHD since 1986. I use Bactroban cream and sometimes I mix it with xylocaine jelly to numb the pain. Two years ago, I found a new dermatologist at the university medical center. He tried me on cyclosporine, even though HHD is not an autoimmune disease, and I was shocked to find out that it worked! My flareups went down to zero! He then put me on a maintenance dose of methotrexate, and it worked pretty well for me. I also got Botox injections to bring down the amount of swelling especially in the summer. I had a pretty bad breakdown between my legs about two summers ago, because I was walking in the heat. So I had to stop walking in the heat and I used baby powder with corn starch. I was surprised at how cool the baby powder felt on my skin that was red and inflamed. I still use the baby powder to try to keep things cool between my legs and it works most of the time.

At the minute I have a bad outbreak,it is the worst yet and it's affecting my mental health.

Yeah I have hh as well and it's at its worst at the moment,seeing dermatologist in 2weeks , can't keep it at bay anymore.

Update to my earlier post. After scouring the web for information I stumbled upon a case where someone used an over counter Castellini w/ phenol to treat their outbreak in the groin area. I decided to give it a try since my other prescription meds weren't helping. I've been applying it twice a day for the past 4 days and my
lesions have almost all healed. I have some bumps that remain on one side but the bumps on the other side have disappeared. So I am hopeful that the remaining bumps will go away soon. I was at my wits end before acquiring the Castellini. It's been a real God send for me.

How is the meds working out so far.

Janice Benbow here I have had hailey hailey since I was 25 now 72 I have found something that works brand name Plum Flower SUBDUE the DAMPNESS and Plum Flower the great windkeeper, Have been taking for 2 months and its gone for now.

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.

I have Hailey Hailey Disease am 72. It manifested itself when I was 58. I belong and am admin for a group called Hailey Hailey Disease New Approaches. World wide our members total over 3,000. I'm based in the UK. Our ethos is first do no harm. That means ditching the conventional meds unless absolutely necessary ie infected but as it is a genetic disorder we felt we needed to start a group that could manage this for the long term. There is a wealth of information in our files and if you need help please apply to join us. You will be asked a couple of questions before accepted but don't let that put you off. There is help out there. All the best to you. Jan