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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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I’m a 55-year-old female. I was diagnosed through a punch biopsy via Mayo Clinic when I was 28 years old I inherited this disease from my dad’s side of the family. I was actually the first one to get an official diagnosis in 1998. I have tried so many oral medications and topical medications throughout the years.
There were about 200 different dermatologist that came to see me as I was part of a clinical study. They all said to try bleach baths I was surprised, but they actually worked to alleviate the disease. You fill your bathtub up with warm water and put one cup of bleach in it and soak for 20 minutes rinse off quickly pat to dry. Hope this helps!
I just got diagnosed with hhd it’s been really hard on me for years. I always thought I had eczema because that’s what I was told as a child the pain of it the embarrassment of the smile from the lesions people asking what it is it was such embarrassment and not being able to explain why or you just smelled they thought that you didn’t have good hygiene. Now that I know what I have. I’m starting to feel a little more confident and understanding it’s not my fault. I just hope that I can get this under control and feel less pain and more comfortable in my own skin.
It takes a while to get used to it and figure out the treatment plan that works best for you, but it is possible! Let us know what kind of support you need, or if you have questions.
I had dealt with Hailey Hailey for 40 years. At times it was as bad as I have seen. I tried every thing my dermatologists recommended. It is not common and most doctors and dermatologists are not familiar with it. 2 1/2 years ago my dermatologist PA suggested we try Dupixent. I have now been completely free of Hailey Hailey for 2 1/2 years ago since I began giving myself a Dupixent ejection every two weeks. Insurance companies are not eager to approve it due to the cost but your and your doctor's efforts will be worth it.
@adj48 Hello, I was diagnosed with Hailey and Hailey in the late 90s. My Mother diagnosed in the 60s. It is heriderity. I found a dermatologist who told me the condition thrived on yeast and sugar caused the condition to get worse. I had a sweet tooth. The Hailey and Hailey would get so bad in my under arms I couldn't wear deodorant, but when I started cutting down on sweets, giving up cheese cake, and other foods loaded with sugar the condition went away. When I have a little flare up I use domboro soaks. I get it at CVS. My condition is controlled by what I eat. I don't take medication and have never had laser surgery. I hope and pray this information is helpful. I hope you can get control over this condition because I know it can control one's life.
Prayers and blessings