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Hailey-Hailey Disease

Skin Health | Last Active: May 12 12:45am | Replies (157)

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@vthailey

I 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!

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Replies to "I am 51 and was just diagnosed with Hailey Hailey Disease 3 weeks ago. No family..."

@vthailey
About diet, I've stopped eating gluten almost entirely and have had success. This is just my experience, but hopefully it helps.
I had HHD flare ups for a couple years. Flare ups happened a few times a year across my chest, neck and forearms, plus constantly under my armpits and on my torso. Not the scalp like you mentioned.
Dermatologist biopsied my armpit to diagnose the HHD.
A family member told me they had gone gluten free and it helped, so that's where I got the idea.
I stopped eating wheat completely and I've entirely cleared up. I haven't had to be as extreme as avoiding cross contamination. Then eventually I could eat a few bites of things containing wheat flour occasionally and been okay. I mean a bite or two every couple weeks. That's been a year and a half ago. There are so many options to go gluten free it's very doable once you make some adjustments and have some support.
There are a few other people on this group who say they do low carb diet, low sugar, reduced tomatoes, etc.
I asked my dermatologist about going gluten free and he said he didn't know that it was studied. But it's what has helped me.
About other things I do to manage it: I shower soon after exercise.
I use a body powder in my groin to keep it dry. Air out after showering. Manage stress, my first big flare up happened related to a very stressful situation, so trying to be aware of that. No idea if anyone else saw a connection to stress. I don't see that on this group.
If I overdo eating some gluten I get a small sores first under my armpits, so I use mupirocin to prevent it getting infected and then get really diligent again.
As I said, just my experience. Hopefully you find relief.