Hailey-Hailey Disease

I have Hailey Hailey too. Broken out under breasts upper thigh and private parts. I go to a dermatologist she prescribes me topical ointments and doxycycline, which doesn’t seem to work right now. Most doctors around this area has never heard of this disease or how to treat it.

My daughter is 48 and has HH. It first presented itself during her second pregnancy 25 years ago. She has had times of remission but also times of horrible suffering.
She’s currently in the hospital. She’s been there since 2/13/21, about 2 months. She has been on long term steroid use to try and control her HH which has made her skin crepe paper thin. She has had an operation on her leg and because her skin is so thin they are having trouble closing her wound. She’s running the risk of loosing her foot due to this reason.
She’s been on the burn unit for 2 months due to her skin. It’s heart breaking that most of the doctors have not even heard of HH. I knew more than the skin specialist who had to look HH up to learn about the disease.
She’s in a mess and is suffering lots of pain. She looked like she had been skinned alive! One doctor tried a medicine called Scarlet Red normally used on burn patients. It has worked tremendously! The problem her front is clearing up but she is bedridden right now flat on her back with non weight bearing on her legs. So her backside is very broken out. They take her to hydro massage to bathe her which gives some relief and I try to wipe her backside down and apply medication!
This disease is very painful and very disabling to whoever has it when it’s completely flared all over your torso.
If you pray please pray for her, for her HH to go into remission! For her leg to heal! For her to be able to walk again. Her wound to close!

Hello @bennett311629 and welcome to Mayo Clinic Connect. I am very sorry to hear of your daughter's suffering and I cannot imagine what it is like to be a parent having to watch her go through this pain. I am glad you have found Connect where members come to get and give support to one another on their healthcare journey.

It sounds like the Scarlet Red medicine is showing some promise and providing some important healing. How can members help you most right now?

Also, as your daughter's caregiver, I do want to offer up another group that may be of interest to connect with other like you caring for family and friends.

-Caregiver Group: https://connect.mayoclinic.org/group/caregivers/

Will you please update us on the progress of your daughter's care this week?

The flare ups have been more frequent and severe, and remissions few and far between. I attributed the frequency and severity to the hot flashes...constant sweating. But as the hot flashes subsided, the HH did not.

Good evening @mickey1014, Welcome to Mayo Clinic Connect. I cannot even imagine what your life has been like with HH. I have my own internal and neuropathic itching issues and they pale by comparison. So this is a rare and genetic disease that I know absolutely nothing about at this point.

I was able to find the NORD organization which also lists all of the clinical trials for HH. There may be other helpful information and it may be worth a subscription.

If you want me to take another look with you, I am happy to do that........I just wish I could do more. Let's not give up......

May you be free of suffering and the causes of suffering.
Chris

I’ve had HH for years and my last break out 3 weeks ago was terrible. I went on my doxycycline regimen and used a body wash with eucalyptus, spearmint and menthol. Then a coal tar base ointment that dries out the breakouts. Luckily my breakout didn’t linger this time.

I have Hhd for quite a few years and there is not enough knowledge about this disease.I am in a concent battle and lately is more frequent and always somewhere on my body

Hello,

I was diagnosed with HHD about 10 years ago. I'm scheduled for breast augmentation/implants in 2.5 weeks. Now I've started thinking about how my skin is thinner between my breasts, likely from steroid cream use (not constant but intermittent and ongoing). I get them between my breasts, along the crease, rarely but sometimes under my breasts (it was terrible there right after giving birth to my son), and I've been getting them in my armpit for the past year or so now.
I told my surgeon about my HHD, but not in depth and he didn't seem concerned. After reading and thinking more, I have concerns about my ability to heal, if stretching the skin there is going to cause major issues, and after surgery/healing if my HHD issues might increase due to increased breast size. I'm in good shape and not overweight, but going from a B to a DD.

Am I making a bad decision increasing my breast size and stretching that area? Do I need to worry about friction to that area during surgery?

Hi @angaz and welcome to Mayo Clinic Connect! I moved your post to a discussion about Hailey-Hailey so you can connect with other members.
Here is some information you may be interested in: Risks and Complications of Breast Implants: https://www.fda.gov/medical-devices/breast-implants/risks-and-complications-breast-implants
- Pursuing Safe Breast Augmentation Surgery: What to Consider Before Surgery: https://www.breastimplantcancer.org/blog/breast-augmentation-surgery-risks/

Have you discussed it with the doctor who treats your HHD?

Yes I have Hhd and also it seems to be getting worse.I feel there is not enough knowledge on this awful disease and my outbreaks seem to be more frequent now