Haley Haley

My mother has this very very bad. She has been to a dr. and it's not working. Does anybody out here know of anything she can put on this to make it better.

Laurie in Alabama

Read the news article that this opinion was posted about:
Researchers piece together the puzzle of Hailey-Hailey skin disease

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If That Did Not Work

posted by Pheobe on 15 Oct 2008 at 4:07 pm

I also have Haley Haley and so does my Father and my Aunt. It came from my Fathers side of the Family so it is passed down. I did not show signs until I was in my early 30s. I use Fluticasone Propionate cream, 0.05% I have a 60g tube. My Father uses Triamcinolone Actonide Ointment USP, 0.1%. I have tried both and both seem to work very well for me. Just a few days it went away but it always comes back. Maybe they will work for your Mother. I see a Dermatologist. I found an older one that knew a little about it. I use to see a younger one and she had never heard of it. I dont know for sure but maybe she should see an older Doctor. My Aunt told me that deodorant under the breast will help keep the heat from making it flair so quickly. I find it is at its worst when I am hot. I hope this helps.I also hope your Mother feels better. Good Luck!

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Others That May Work

posted by LivvyP. on 18 Nov 2008 at 8:53 pm

I have been living with this (Haley Haley) since the '80s; that is, myself and a female cousin. It runs in families with mostly male siblings. It was passed down to me by my mother, whose brothers had it, skipping both of her sisters. It is really a nuisance. I have tried many creams and had more success with muciprinone cream and desonide, lately. You may find that these creams work for awhile and become resistant. I have used all of the above. Dermatologists are becoming more knowledgeable about it. It is somewhat rare, but familial, I am told. It is not contagious, but breakouts can last for months. Best cured when treated by a dermatologist. Good luck to you.

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JOD

posted by John O'Dwyer on 12 Jan 2009 at 5:43 pm

I have Haley Haley and have had it for some 58 years.My Dermatologist says it is a gene problem passed down on my mother's side.When it breaks out I use Acitretin (Neotgason)25mg Capsules with Celestone-M Cream 0.02%. If it re-infects itself I take Keflex 500mg capsules also. "I believe women have to be careful taking the Acitretin". A young doctor where I am treated says that a trauma can start it off. I am very conscious of my diet and do not eat wheat based foods,yeast and egg.

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Haley Haley

posted by Ken Tofel on 10 Feb 2009 at 6:11 pm

I am 54 years old male. My mother lived with Haley Haley's all her life. My older brother and I have it too. I thought It was herpes at first, but the location of leasions did not support it. I break out just under my arm pits (5 inches below the pit) and on the back of my neck. Presently, both my brother and I use 50MG of Minocyoline one tab every 12Hrs it clears up in seven days. I've tried zovirac and all sorts of creams,with no luck. I must tell you, once you start seeing signs of haley haley's take the med's or it takes forever to rid yourself of it.

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Mr.

posted by Manfred Krger on 16 Feb 2009 at 12:32 pm

I also have Haley Haley and so had my father and my two brothers as well as my sisters.It came from my fathers side of the family so it was passed down to us.I just came across this web site and I very greatful as I did not know that there are other creams and pills. I have been using prescrition strenght cordison cream 1% and also 0.5% and it worked well. In about one week it did clear up. The over the counter creams of cortison are much to weak and do not help. I live in Los Angeles and plan to to across the border to Mexico this coming weekend to buy some of the creams.

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What helped me.

posted by Kristy on 09 Mar 2011 at 8:15 am

I have been dealing with HHD for 10 years. Last year was my worst. I could not get rid of the flare up I was having in my groin area. I ended up with a secondary staph infection that I kept for 5 months and was also bed ridden for a month because of the pain of wearing clothes and walking. After long treatments of antibiotics, sulfa drugs, steroids and vinegar soaks and it cleared up enough to have 2 V-beam laser treatments. They went great. I also use ultravate ointment. After the laser treatments I underwent abdominoplasty surgery to remove excess skin and fat that irritated the area and also lead to moisture problems. I now am 6 weeks after surgery and I am HHD free. The areas are still tender but are not blistered or broken open. I will have a breast reduction in 3 weeks to help prevent the break outs under my breasts. Hopefully that will help make the summer tolerable.
Maybe these treatments will work for someone.
Kristy in Alabama

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This Is Working For Me

posted by debbie on 18 Mar 2011 at 8:19 pm

i have been on the paleo diet since january 2011 and have found that by just eating fresh fruit and vegetables except potatoes,corn, peas and beans and nuts (4ox per day) eggs, fish, seafood, chicken breasts, and lean meats and eff white protein powder with all spices i have not had an outbreak, even though it has been hot here in australia. i also have luke warm showers/ cold showers and wear clothes made of cotton without sleeves

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Living With HHD In Alabama

posted by Melissa on 28 Jun 2011 at 8:37 am

I have been dealing with HHD for years. It came from my Fathers side of the family. I have had mild cases and really bad cases. I get immuned to the creams and steroids from my dermotologists and have to go and have them changed. I do find that tanning in a tanning bed with the ultra violet rays help dry them up. I can relate to the pain. At one time, my entire back, under my breast, behind both knees and on both legs around my panty line in the groin area was all broke out at one time, you talk about miserable and painful. I was in a great deal of pain. When you break out, it is best to wear cotton. When I was broke out really bad (above) I had to purchase mens cotton tank tops to wear. It is aweful. When the places ooze, it can really stain your clothes. I hate living with this. Right now I am broke out really bad between my breast and under them. Living with the pain in Alabama!!!!

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Low Carb Diet

posted by Jodie on 12 July 2011 at 11:41 pm

My mother has suffered from servere Hailey Hailey breakout and I myself have had a few smaller breakouts. Since following a low carb diet we have not had any breakouts at all. Not sure if this will work for everyone but it is worth a try.

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Living with Hailey-Hailey skin disease

posted by Andre on 25 Sept 2011 at 5:02 am

I have hhd my father and two twin half brothers. A couple of unlce an one aunt and men cuz. We think my grandfather had it

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my husband has had this for 30 yrs - Hailey-Hailey and psoriasis

posted by barbara matranga on 30 Sept 2011 at 8:36 pm

My husband has had this problem along with psoriasis.
he goes to a very good dermatologist who knows a lot about the problem. he uses Castolini Paint, an anitfungal liquid that is compounded by the Compounding shop. and he takes an antibotic when it is very active, along with cortosine type creme. and he actually uses corn starch instead of Zeasorb sometimes as it is cheaper and works. it is annoying and it seems less stress helps and maintaing less fat folds in the body. but that is not the whole answer, he thinks his grandpa had it, and he is Italian, my daughter is showing a problem with it and she is 37 yrs. old. I hope this helps.

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I have HHD too...

posted by Buttercup on 08 Jan 2012 at 9:45 pm

I was 25 years of age when I got it but didn't find out until I was 32...Yes I had to wait that long. I had a really bad outbreak when I was pregnant. The Dermatologist thought it was a Staff ifection, and 6mo later I had a biopsoy and found out it was HHD. I use a generic topical called lotrisone cream by RX only. It works very well for me. I notice that in the late falls and winters it gets really bad, but in the late springs and summers I have no problem with the "outbreaks." It is so nice to hear other peoples comments and concerns about this disease. It is not easy to live with it, but I think it is tolorable for me. I haven't needed to change my diet yet!

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Living With HHD

posted by Heidi Jackson on 20 Mar 2012 at 5:08 pm

It seems to me that a lot of people out there still don't know where their HHD comes from, so, let me enlighten you!
First of all. HHD is not only familial, which means that it has been passed on to us by a family member, ( in my case my father) but it's also a chromosome 3 defect - I just learned that from a Dermatologist at one of the Hospitals here in Dallas. And yes, some of the syptoms that have been mentioned are the same with everyone, some are not typical. I do not believe that a specific diet helps but the sun sure does! Stress is also a factor for outbreaks and I find that since we do not have certain enzymes and proteins, our skin cells tend to 'seperate' and therefore we blister. Also, since it is a very rare disease, there is very little if any resaerch done - the last time anybody bothered was in 1994! Has anyone out there noticed a strange smell along with their outbreaks? I am bombarded with this odd smell and I found out that it is related to my HHD.

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laser treatment

posted by Katie on 27 Apr 2012 at 6:03 pm

I was diagnosed with HHD about 3 yrs ago after my mother and I both were dealing with this for years before. We have tried every cream out there and they don't work, or if they do eventually you become resistant to it. I had a laser treatment done almost 2 yrs ago under one of my breasts and it has not come back in that area! My insurance won't cover the procedure, but at this point it is the only thing that has worked for me so I have been saving up! Talk to your dermatologist about this procedure, it's the only thing that has been a consistent fix for me!

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