Hailey-Hailey Disease

Posted by danavs @danavs, Oct 31, 2016

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?

Interested in more discussions like this? Go to the Skin Health Support Group.

contek | @contek | Sep 18, 2023

Has anyone tried low dose naltrexone for HHD? My doctor mentioned it is emerging therapy. Unfortunately, she moved and I cannot find another doctor familiar with HHD. I would like to pursue this and am curious if others have tried it? Thank you

christy5348 | @christy5348 | Oct 7, 2023

In reply to @kanaazpereira "Hello @christy5348, I'd like to welcome you to Connect, and sincerely apologize for the delay in..." + (show)

Thanks, but I changed my diet. I have ZERO symptoms now. 😊

christy5348 | @christy5348 | Oct 7, 2023

In reply to @contek "Has anyone tried low dose naltrexone for HHD? My doctor mentioned it is emerging therapy. Unfortunately,..." + (show)

I changed my diet and have ZERO symptoms now.

christy5348 | @christy5348 | Oct 7, 2023

Change your diet. I changed mine and am symptom free now. 🙏

contek | @contek | Oct 7, 2023

In reply to @christy5348 "I changed my diet and have ZERO symptoms now." + (show)

Definitely interested in what changes you made. I’m willing to give diet change a try. Thanks!

christy5348 | @christy5348 | Oct 7, 2023

In reply to @contek "Definitely interested in what changes you made. I’m willing to give diet change a try. Thanks!" + (show)

It’s a lot to to put here, unfortunately. You can message me on my instagram if you’d like. @_you_can_heal_

contek | @contek | Oct 7, 2023

In reply to @christy5348 "It’s a lot to to put here, unfortunately. You can message me on my instagram if..." + (show)

Thank you for your response. Unfortunately I don’t have an Instagram account.

christy5348 | @christy5348 | Oct 7, 2023

In reply to @contek "Thank you for your response. Unfortunately I don’t have an Instagram account." + (show)

Ok. Well, for starters I stopped eating eggs, gluten, and dairy. I cut back in my meat consumption also. I started eating LOTS more fruits and vegetables.
I don’t want this to sound weird, but you’re welcome to email me if you’d like. I can provide my email.

taurus430 | @taurus430 | Nov 1, 2023

I am new to the Hailey Hailey diagnosis. I suspect I have had it for many years now and just got the diagnosis in May. I have had it mostly under my arms but since being sick with cat scratch disease in April I now suspect it is on my eye lids and groin area. I was diagnosed with herpes in my 20s but might challenge that with my gynecologist since being diagnosed with Hailey Hailey now. I want to know if anything has worked as far as changing diet? Would it be worth it to be tested for food allergies? What about exercise? I need to be more active and build some muscle. I used to love dancing and ballet. Can I still do that? I am already gluten free as I have had celiac disease for many years now. I just want to be able to relieve this itch so maybe I can wear jeans every once in awhile too. Lol

Justin McClanahan, Moderator | @JustinMcClanahan | Nov 1, 2023

In reply to @taurus430 "I am new to the Hailey Hailey diagnosis. I suspect I have had it for many..." + (show)

Hello @taurus430. I moved your discussion and combined it with an existing discussion titled: "Hailey-Hailey Disease" - https://connect.mayoclinic.org/discussion/hailey-hailey-disease/.

I did this so you could meet members @christy5348, @contek, @esciacca, and @jammyrick who have recently discussed their Hailey-Hailey diagnosis as well.

@taurus430, while we wait for some member input, were any treatment options or suggestions given from your provider after diagnosis on how to help with the itching?

View More View Less

Please sign in or register to post a reply.