Thank you!: Thank you for the warm... - Hailey-Hailey Dis...

Hailey-Hailey Disease Worldwide Support Community

Thank you!

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Thank you for the warm welcome and for creating this group! I look forward to watching it grow. :)

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CindySiegelShepler profile image
CindySiegelShepler

Thank you so much, ckhurst!! We are excited to have this new forum to share with the sufferers and loved ones. :-) Thanks for joining us!

You are very welcome. So glad to be here.

I have some questions for you, if you do not mind sharing. Once you received your HHD diagnosis, what type of treatments have you utilized, and which ones have been most successful in keeping flares and symptoms under control?

CindySiegelShepler profile image
CindySiegelShepler in reply to

Great question! Thanks for asking. I have utilized a lot of different treatments; Low Dose Naltrexone (LDN) is very effective for me and many others afflicted with HHD. Many of us also use topical creams, such as steroid creams, and oral antivirals. We have to be diligent in our hygiene habits and keep a healthy diet to avoid secondary infections. It can become a full time job!

AnnieNewZealand profile image
AnnieNewZealand in reply to

Hi CK, I'm assuming your question is for everyone?

Apologies in advance for a long post.

I've utilised lots of different treatments too. Oftentimes when I flare up, it quickly develops into an infection, which I treat with antibiotics (flucloxacillin) and a topical steroid (pimafucort). This usually clears up the outbreak within three weeks or so (I generally ask for a four week script). I've used both green french clay and potassium permanganate to dry out ooziness, and found these to be effective (though messy).

For prevention, I use home-made padding (cut up absorbent soft fabric) under the breasts, and this I have found to be possibly the most effective means of keeping flares under control as it prevents the friction and sweat issue in the area, and therefore prevents outbreaks. Bleach baths have been enormously useful for keeping infection to a minimum when I have flare-ups.

Many people find that diet has NO effect on their disease, but it has been an obvious area of interest for me. I try to eat "real" food with few additives or processing (basically fresh fruit, vegetables and proteins), and avoid sugar as much as possible. Times when I've been really focused on living a healthy lifestyle with "clean" food and lots of exercise I have experienced many months (over a year) of remission from my HHD. When I have had processed sugar I see an IMMEDIATE reaction in my skin, and I always break out, usually between and under the breasts. Unfortunately I love sugar, and indulge from time to time, always quickly realising what it mistake it is for me... I used to break out after having citrus fruits as well (concentrated sugars perhaps?), but in the last two years I've noticed that isn't happening any more. I did however eat six golden kiwifruit a few weeks ago and noticed an itchy red spot between my breasts the following day, which was treated quickly with pimafucort and disappeared. I used to find that fresh tomatoes exacerbated things too, so I simply avoid them now (interestingly, cooked tomatoes don't worry me).

I have found that alcohol is not a problem for me (thankfully) although I know some people have noticed that their HHD flares up when they have more than a glass or two.

I'm currently dealing with a persistent spot on my upper thigh at the groin. This is incredibly annoying as any movement can cause it to macerate and bleed due to the location. So I'm trying to wear clothing that is soft (cotton tights) and avoid anything like jeans or other pants that rub even a little. I've been using topical steroid ointment, and though it's under control at the moment, it hasn't disappeared. My fear is that this is a "new area" for me and may hang around for a while.

I used to have constant outbreaks in both armpits and under breasts. These have both settled to only intermittent outbreaks nowadays, but it seems to me that my HHD is migrating to other areas now (specifically upper thigh, groin and behind the neck). I'm really interested in learning of different approaches to treatment and prevention.

CindySiegelShepler profile image
CindySiegelShepler in reply to AnnieNewZealand

AnnieNZ, thanks for your detailed and helpful post! A lot of great info there. Hopefully the migration will stop! Perhaps LDN will be a treatment to help with prevention and more rapid healing. It has helped me and several others with HHD. Not all my outbreaks have stopped, but it is certainly helping.