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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!
Replies to "I have some questions about Hailey-Hailey disease as my brother was diagnosed with it several years..."
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.
hello,
I have had Hailey Hailey Disease since 1986. Since HHD is exacerbated by heat, moisture, friction, or infection, I would say it is HHD. There is a website that has different tabs on it that you can get further information on HHD, haileyhailey.com, I suffered from constant skin breakdown for 20 years. then 2 years ago, I saw a new dermatologist at the university clinic. He prescribed cyclosporine which is used as an autoimmune agent. Even though HHD is NOT an autoimmune disease, it worked for me! then I was switched to low dose methotrexate and I maintained with hardly any breakouts. Once the skin breaks down, it is easy for it to get infected with a secondary infection, so antibiotic creams can help clear it up, but the skin breakdown is from the HHD.
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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.