Hailey-Hailey Disease

I have some questions about Hailey-Hailey disease as my brother was diagnosed with it several years ago and had a serious, and prolonged outbreak. He is 90 now, with other problems so have not asked about HHD. We remembered our Dad suffering from rashes behind his knees and the back of his neck. I know this is hereditary with a 50-50 chance of being passed on, however neither my sister nor I exhibited symptoms. My daughter has suffered from severe rashes under her armpits, between and under her breasts and her doctor told her this was infected eczema. Whatever he prescribed has helped. However, I am curious as to whether she might have inherited HHD, especially since unexpectedly I have developed “jock itch” that makes me wonder if belatedly (age 80) I am showing symptoms. I have not been to the doctor yet, and have found Desenex powder relieves the itching. I know what I have is mild compared to what my brother or daughter have but wonder if I should get a diagnosis for my daughter’s sake. She would have a double whammy since her father has psoriasis.
Thank you in advance for advice/guidance!

Hi, I have the same symptoms. Now getting worse. I’m 54, and 20 years with this. My dad two sisters one brother, and two of their kids.
Painful and heartbreaking to see dermatologists do not have the treatment information. I have Kaiser in Los Angeles, but trying different options like a guinea pig. I follow their recommendations but nothing helps. Now my lessons are sticky and crusty when it dries.

I received naltrexone, glycopirrolate, ibuprofen, Botox, gentamicin, muporucin. Nothing helps. I’m in the middle of a crisis. Looking for something kind of help.

Dear @lcl44, I was diagnosed with HHD at 50 when I had blisters that were spreading and wouldn’t go away. As far as I am aware, no one else in my family has it. I say this to tell you that, I am not an expert by any means but I think it makes sense for both of you to be tested for HHD. It will at least point the dermatologists in the right direction in terms of treatment. Having said that, you know that it can be a long journey to find what works for the individual since different things work for different people. It’s been almost 2 years and we still haven’t found the right medication but I am hopeful. There are supplements that can help, diet, stress management as well as regular medications. I am glad that you all have each other for support. I am sending healing thoughts to all of you.

I have HHD, which was misdiagnosed for over 30 years as herpes, psoriasis, whatever. It was finally correctly diagnosed via biopsy of an active lesion. While creams and powders helped with breakouts, nothing lessened the frequency until I started low dose naltrexone. Very few doctors have experience with HHD, so I researched it (primarily on PubMed) and brought the LDN treatment research to my derm. He was unaware of this option so researched it himself and started me on 4.5mg daily. I have not had a serious episode since. I do use medicated power daily to keep the problem areas dry, and Betamethasone if I get a small breakout. Starting LDN was life changing as I am a very active 69 year old and there were times it was debilitating.

Our daughter is about the same age as you, @angelita1.
She lives in Norway so medical systems and terms are different. Some of the things she has tried ..
1) my husband’s Betamethasone Valerate on the assumption she had Psoriasis as he does, and that helped.
2) she said when she was on the Whole 30 diet, it cleared completely … but I gather that is a difficult regime to maintain.
3) her latest flare was when she was visiting recently and forgot the medication she is on for the infected eczema,
and very likely overdid the sugar and alcohol consumption during family celebrations! Sugar and alcohol are to be avoided on Whole 30 so that indicates, to me at least, a dietary modification to be considered.

Thank you, @vthailey, for your helpful response.

Good for you doing that research, @contek .. and to your doctor for listening! So glad that it has helped you.
I had to Google low dose naltrexone since I was not familiar with it. Seems like another family member should be on that for his problems … but that would belong in a different forum!

Thanks. We definitely need to be our own advocate!! Interestingly, LDN does not have the same effect on the body as higher doses that are prescribed for other issues.

Try to avoid the corticosteroids use, these makes the skin thinner, and with the years more difficult to heal. My sister use glutathione to increase the immune defense, it is a genetic condition but I think it could help to improve the episodes. I ordered it in Walmart and waiting anxiously to have it. I discovered yesterday, when my bounds from blisters where hard and dry erosive and super painful, if you go to the shower and just take little showers in that areas, is relieving. Then I had one little sample of sensitive skin liquid dove soap, I scrubbed my hands and softly I put them on my wounds, and rinsed. Men! I can walk now. It helped to hidrate that dry area, a bit. I know is not too much but in the middle of an aggressive crisis anything that helps deserves to be shared.
Thanks and the best. Not sure if rituximab, works for this benign familial phemphigus, as it is called HHD. I saw some remission cases on other kinds of Pnemphigus.