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Hailey-Hailey Disease Worldwide Support Community

Recently diagnosed with HHD

Hi Everyone,

My name is Brian and I'm new to this group. I've recently been diagnosed with HHD. I am 34 years old, living in Canada with my wife and two kids. While growing up, my father would break out in a rash mostly on the chest and armpit....He passed away in 2003 (unrelated to HHD). We didn't know that he had HHD at the time but can now assume I inherited it from him....I've been battling with extreme itching and pain on both sides of my groin for the past year and a half. I have a follow up appointment with my Derm in a few days. He mentioned he'll be prescribing dapsome......my rash hasn't ever gone away...I'm not a sweaty person but find that I easily sweat in my groin area....not sure if this is because of HHD or that I'm naturally sweaty down there....I've heard alot of good things about botox and LDN.....I'm in so much pain physically and emotionally....it breaks my heart that my two children have a 50/50 chance of inheriting this and that I have to put my amazing wife through this also....I don't wish this disease on anyone.

Any sort of advice or guidance from anyone would mean the world to me

Thanks everyone, Brian

3 Replies
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I tried botox once and it works. In the meantime, try Dr. Bonner's all purpose wash. Eucalyptus works best.

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Hi Brian , My Name is Salem Just read your post & felt sad , I Know what you are going through! Pls feel free to Call me & I want share with you what really worked for me , might work for you as well Inshe'allah ( God willing)

My Number is 0015715511640

For the past 2 Years I'm almost FREE Alhamdulelah ( Thanks God)

I would be Very Glad to Advise you all the Medications & Diet( most Important)

I Don't want see 1 Human Being to Suffer from This Terrible dissese Which Sicenificaly so far has No Cure . ( But there is)

Don't Give up ( as I use to between 2007- 2015 Ahhhh I was in HELL Almsost 6 Days a week)

Call me Pls

Wish you Great Holiday & Happy

New year with your Family

Salem

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I'm curious to know why you don't just share your information freely as most people have in order to benefit other sufferers. If I had information which I though would help just one person I would post on this forum with no hesitation.

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