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Dianne has a family history of Hailey-Hailey disease, a chromosomal defect.
Her skin first broke out in her 20s, and a biopsy determined it was Hailey-Hailey. It wasn’t much of a problem until her 50s, when she started having more frequent outbreaks and longer healing. Topical steroids, oral antibiotics, antifungals, antivirals all were used to treat the disease and secondary infections.
It’s made worse by friction, so it causes blistering in folds of skin and under waistbands. The blisters open, get fissures, and are difficult to heal. She would sleep with ice packs for the itching. She found a Facebook group on Hailey-Hailey and discussion of low dose naltrexone (LDN). She was familiar with naltrexone from working in the addiction field, and she researched LDN. Even though Hailey-Hailey is not an autoimmune condition, she thought it would help with the inflammation, and LDN seemed very safe to take.
Her dermatologist researched as well, and prescribed it during a bad breakout one April. She dreaded summer because how sweating and friction make Hailey-Hailey worse. She started LDN that September and persisted taking it despite wild dreams. By the third week on LDN she could see improvement in her skin, it wasn’t seeping, and she was sleeping better.
Currently she is greatly improved, but still gets some outbreak if she wears something that rubs; but her skin heals quickly. She does not find stress to be a trigger, however eating too much sugar or wearing something that rubs will cause some blistering. She recommends LDN for its effectiveness, lack of side effects, and low cost.
Summary of Diane's interview, please listen to the video for the full story.
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