Recently diagnosed with HHD

[Briancanada]

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

[arshaileybegone]

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

[hammyasu]

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

[macymoo02 in reply to hammyasu]

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.

[Jacampbe]

I can relate to you, Brian. I have 2 kids as well and am praying they don't get it. I also feel bad about the emotional turmoil I have put my husband through.

[MusicPuggle]

Hi Brian,

I to have HHD for 24 years. I no longer use antibiotics and pain pills. My HHD is so much better. My Dr has me take bleach baths every other day (1/2 cup to tub) and use Tacrolimus ointment and Glycopyrrolate (this helps control the sweat). For me, Glycopyrrolate works so much better than Botox Ask your Dr about Glycopyrrolate.

[Feelyourpain]

Hi ,I have had HHD since I turned about 45 to 50 and sadly to say as most of you know it is a terrible thing to have. Because it isn't really a disease but more of a genetic thing .So I still have it but I can share what I do to mostly keep it livable .I haven't yet found a magic cure or remedy for it . What I use and is my godsend is Triamcinolone Cream 1.0% I use this twice a day and it helps me make it through the day . I also use a soap to wash the areas to keep the 2ndary infection away and that is Hibiclens(Chlorhexidine Gluconnate Solution 4.0% W/V ) but you have to be careful and use this soap as per your doctors instructions These are what I use and yes the cream is a steroid but it is the one thing that works for me . Also I see a dermatologist who tried me on an out of the box drug called Naltrexone 1.5 cap as I was Told this drug is used for opioid users to keep them off the drugs but she said that she had patents who used this and didn't have any signs of HHD now that's what I was told but not sure if it works because It made me sick and I could not take it . My doctor said it maybe the base it was mixed in made me sick. So I may try it again soon .They do not sell it over the counter my doctor had it mixed at the pharmacy. Ok this is what I use to get me through the day and along with these products I take antibiotics when I have my worst break outs. I hope this is some information you can ask your own doctor about and see what he thinks .Because we all are different and each person can have a different reaction to the meds.Also in closing on my underarms I use unsented secret solid .I find that it blocks the pores and helps keep the sweat down so HHd doesn't kick in and if I feel the burn I use a small amount of the cream and then back to the secret .So far no HHD under my arms. . I hope this helps .If I can help anyone in anyways please ask and please DO NOT sent any pictures I have HHD and know what it looks like . Good luck and let me add I know and feel how this affects our lives and how it mentally can drive us into a depression state .But remember this isn't something you went out and caught but something you were born with .So do your best everyday and keep an upbeat out look on life.Because no one who doesn't have HHD has any idea how much pain and embarrassment it can be just to live with everyday .But please don't allow it to consume you . Remember you first !