Has anyone learned of a new treatment for Hailey Hailey disease

Posted by jeanneted @jeanneted, Aug 15 3:58pm

I’m 74 years old I’ve had Haley Haley since I was thirty eight. It’s a devastating disease. It’s not just inconvenient or uncomfortable. It’s painful and I have it now. I asked my skin doctor if there is anything new out there to help it and they keep coming up with low dose nelproxine , which Doesn’t work. In my life with Hailey Hailey, I have dealt with many drugs and nothing helps so I just thought maybe they’re researching it and finding other things to do for it. Thanks for your time.

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John, Volunteer Mentor | @johnbishop | Aug 16 5:57pm

Hello @jeanneted, I'm sorry to hear you have been dealing with Hailey-Hailey for most of your adult life without much help. You might like to review the helpful tips offered by members in this older related discussion:
- Hailey-Hailey Disease https://connect.mayoclinic.org/discussion/hailey-hailey-disease/

If you change the sorting for the discussion to show Newest to Oldest at the top right below the discussion description you will see many posts for this year.

I'm not sure if you have ever used Google Scholar (https://scholar.google.com/) to find medical research but here are a few papers I've found doing a quick search.
-- Hailey-Hailey disease: clinical, diagnostic and therapeutic update
https://www.sciencedirect.com/science/article/pii/S0365059624001065
-- Patients' perspective, quality of life and treatment goals in Hailey–Hailey disease: Lessons learned from the German National Registry:
https://onlinelibrary.wiley.com/doi/full/10.1111/jdv.19583
-- Google Scholar link with search results to more documents:
https://scholar.google.com/scholar?as_ylo=2024&q=hailey-hailey+disease+treatment&hl=en&as_sdt=0,24
Hope you find some answers.
Have you been able to find any research on treatments for Hailey-Hailey?

jeanneted | @jeanneted | Aug 16 7:10pm

In reply to @johnbishop "Hello @jeanneted, I'm sorry to hear you have been dealing with Hailey-Hailey for most of your..." + (show)

I have seen different treatments for Haley Haley one included needles of Botox and laser on the skin. No for sure treatment . My sister had that Botox done which is very very painful. Others, were low dose nalproxin , Gentamicin ,steroid cream, drinking magnesium chloride, But it seems nothing helps! It goes away when it wants to. So , other than research scientists trying to fix the mutant gene that we all have, I don’t give much hope that any treatment or cream is gonna help us.

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