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?