Connect
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Skin Health Support Group.
Connect
NEW MEMBER SEPT 25 2022
I am 82 years old and I have been living with HALEY-HALEY for 47 years some times were very bad, I have 4 siblings and cousins that all have it.
I know that because of the disease my skin is very thin and my age does not help either. I wear skirts all the time because slacks iterate and makes maters worse. Will add photo next time if I can find it in my phone.
Rose 82
-
Like -
Helpful -
Hug
2 ReactionsHi @rose82, welcome to the group. I moved your message to the Hailey-Hailey disease (HHD), also known as benign familial pemphigus, discussion group here:
- Hailey-Hailey Disease https://connect.mayoclinic.org/discussion/hailey-hailey-disease/
I did this so you can read some of the previous posts and connect easily with fellow HHD members like @skrammy54 @angelalmoralesc @patience83 @mickey1014 @z68m @bennett311629 @denziejones @angaz. Many of them have also lived with HHD for many years (decades) like you.
Rose, have you found that the flares have improved over time? Wearing skirts is a good idea.
-
Like -
Helpful -
Hug
1 ReactionWould this really https://pubmed.ncbi.nlm.nih.gov/30291662/
They claim a successful treatment with vitamin D.
I feel your pain. I have had Halle Halle for over 35 years. I’m 72 I had it so bad one year that I was literally unable to move for three months. And couldn’t get out of bed for a month. My father had it, my brother has it, my sister has it, and my oldest daughter has it. Horrible, genetic disease.
The dermatologist prescribed me the Naltrexone at 3mg in the middle of a mild breakout. They only have 3 others in their practice that they have prescribed this treatment. The other patients showed some improvement of their condition after 1 week, I didn’t get the same results. So the dosage was increased to 4.5. Which helped for about a week, and then 80% of my body has broken out. I’ve used a number of topicals, but what I don’t understand is why isn’t there something besides prednisone to help control the itching. Benadryl certainly doesn’t work. And I can’t control waking up in the middle of the night to the scratching. As we all know it’s extremely unmanageable. Perhaps especially given my occupation.
As for the comments of vivid dreams and lack of sleep, yes that is problematic for me as well.
I am currently having a flare up. I have a bad rash with cuts on both my arm pits and between my crack of my rear and a tear and a lot of moisture at my tailbone that burns like a cut. I have grayish brown dots or bumps in my tea crack that itches bad and burns and this area has a lot of moisture. I am in super pain . The brown bumps under my breast have healed but can come back quickly . A fee time I had the rash on my neck but only when I wear necklaces. The cremes they prescribe do not help. And they doctor also gave me a wash like hydrogen and doxycycline pills and a topical antiobiotic lotion cyntramine I think. I’m still I. Utter pain I can’t walk or sit or have my clothes rub me. I don’t no what else to do and I’m 44 a single mom to a 7yr old
How many times a day do you take it
Welcome @dawnlopez5969. Allow me to tag fellow members who live with Hailey-hailey disease like @keny1922 @jeanneted @rose82 @skrammy54 @angelalmoralesc @patience83 @mickey1014 @z68m @bennett311629 @denziejones and @angaz.
I'm so sorry to hear that the wash and cream that were prescibed are not working for this current flare and that you're in such awful pain. This must make being patient with your seven year old really hard.
What has helped your flares in the past?
-
Like -
Helpful -
Hug
1 ReactionI honestly only had flares behind my leg where it bends and it took like 3. -4 weeks to heal with cream that’s all I was prescribed then my armpits started and they don’t look nice I’m always embarassed to wear tank tops. But they have healed I never had a bad outbreak between my buttocks and perineal area u til now this is the worst. I got the wash and cream and they just prescribed me pills called deltasone
-
Like -
Helpful -
Hug
1 ReactionI am 51 and was just diagnosed with Hailey Hailey Disease 3 weeks ago. No family history. I have sores mainly on my scalp which are extremely painful. I have been prescribed oral anti fungal medication, municiprone ointment, steroid lotion, and am currently on prednisone, doxycycline, steroid oil, steroid ointment and just started laser light therapy. I am wondering if anyone had found any diets that have helped to improve and prevent flare-ups. I am overweight and have seen recommendations for weight loss to prevent sores in skin folds. Weight loss would be good for me in general but would love advice on foods/types of diets or foods to eliminate that others have found useful.
I am a woman and have lost a fair amount of hair due to the plaques. Has anyone experienced this and has your hair grown back?
Thank you in advance!