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Hailey-Hailey Disease
I have a painful and itchy hereditary skin disease known as Hailey-Hailey. I am 78 years old and it has gotten much worse as I age. Before I fell twice in the last few months I was seeing my dermatologist every two months; now I talk to him on the phone or leave a message about my condition and prescription needs. The worst place on my body is between my legs and behind, causing horrible pain when I sit or try to get in and out of a car. I have the blisters, whelps, crusting, raw skin, and bleeding over much of my body and everything (clothing, bedding) hurts my body. Have had the disease in between legs/behind for 18 months; it gets a little better, then worse again and when urine touches it, I sometimes cry or almost scream. Do any of you or someone you know have HH?
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Hello @danavs,
Hailey-Hailey disease (HHD) is such a rare skin disease, and it can be so painful; I'm very sorry. However, I'm glad you came to Connect to seek some answers. I'd like to introduce you to a few members; they don't have Hailey-Hailey, but hidradenitis suppurative, another rare skin condition, similar to HHD, and I hope they can provide some insight. Please meet @autumnleaves, @amy75, and @sandig.
I also hope @midnight, @mbrittain, @drew1991, @msdodo987 will return to give us an update on how things are going.
@danavs, have your doctors ever suggested a laser treatment? What do they recommend?
kanaazpereira, Connect Moderator. Thanks. HH is because a missing gene causes the skin cells to become unstuck, so laser surgery is out of the question. I refuse any surgery because it messes up the skin so bad. Even the pads they put on chest and under breast to monitor everything for a colonoscopy leaves my whole chest messed up forever. Last time they used juvenile pads and it wasn't quite as bad. Skin on skin causes flare-ups, so I pat skin with corn starch on much of body every day. I have been using corticosteroids for years which is the only thing that helps to keep it from spreading and lessons the pain, but it also causes the skin to become thin. Anti-fungals helps some with the itching. Heat outside and heating in winter inside makes condition worse. I trust my dermatologist with treatment and he also has wonderful, caring bedside manners - which we all need.
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1 ReactionThank you for the information, @danavs; it must be exhausting to be so careful!
Have you heard about the drug afamelanotide? Here's a paper that was published about its efficacy in treating Hailey-Hailey disease:
http://bit.ly/2fpuxmQ and http://bit.ly/2em4U5u
Although Bullous pemphigoid is different, but since Hailey-Hailey disease belongs to the 'pemphigus' autoimmune disease family, I would also like to introduce you to @earljohnson5030, and @profkatg as they have discussed their experiences with Bullous pemphigoid. Or you can view the discussion within the Autoimmune Diseases group here:
http://mayocl.in/2ema9lV
@danavs, has your dermatologist spoken to you about afamelanotide?
kanaazpereira, thanks for the info on afamelanotide. I will ask my dermatologist about it.
I'm so sorry to hear you are having such an awful time. I have HH, and know all to well what you're going through. I hope you can find some relief!
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2 ReactionsHi @christy5348. Thanks for letting me know I'm not the only one on Connect with HH. Can you tell me how the disease affects you. I'll remember you in my prayers and send you a hug!
Hello @christy5348,
I'd like to welcome you to Connect, and sincerely apologize for the delay in responding. We are so glad to have you here.
I also wanted to encourage you and @danavs to view this article about carbon dioxide laser treatment for Hailey-Hailey disease, as results show that resistant cases that fail topical treatment have responded very well to this form of therapy:
http://bit.ly/2mQVAfI
@christy5348, @danavs, have you considered this minimally invasive procedure as an option?
Complicated disease with no easy answers. Have recently tried low dose naltrexone as per the Archives of Dermatology August issue (2017). Robinul can be useful. Blue light therapy (as you would do for pre-cancers) has helped. In other words, treatment is empiric-trial and error.
Hi, @dsl1, and welcome to Connect. Thanks for your input for this discussion on Hailey-Hailey Disease.
How are you feeling these days with some of these treatments? Are you still experiencing a lot of symptoms?
What a relief to find others with whom I can talk about this! After scratching my head (and a few other places) for about 12 years, a dermatologist finally diagnosed me with HH a year ago. @danavs , have you tried tacrolimus ointment? It isn't exactly working miracles for me but it seems to be helping. Additionally, I take 4-5 mg of glycopyrrolate to prevent sweating, as the dampness from skin-to-skin definitely aggravates it. Like I said, I'm not all better, but I'm much more comfortable than I was a year ago.
FYI I'm a 41y/o female and have the HH on my outer labia.