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Hailey-Hailey Disease
I have a painful and itchy hereditary skin disease known as Hailey-Hailey. I am 78 years old and it has gotten much worse as I age. Before I fell twice in the last few months I was seeing my dermatologist every two months; now I talk to him on the phone or leave a message about my condition and prescription needs. The worst place on my body is between my legs and behind, causing horrible pain when I sit or try to get in and out of a car. I have the blisters, whelps, crusting, raw skin, and bleeding over much of my body and everything (clothing, bedding) hurts my body. Have had the disease in between legs/behind for 18 months; it gets a little better, then worse again and when urine touches it, I sometimes cry or almost scream. Do any of you or someone you know have HH?
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It sounds like you’ve had good results with the natural medicine, can you share what it is? I hope that you heal soon!! Thank you
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3 ReactionsLow dose Naltrexone. I take 4.5mg daily. It has to be made in a compounding pharmacy as standard dose available commercially is 50 mg.
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1 ReactionLDN Low dose Naltrexone. I take 4.5mg daily. It has to be made in a compounding pharmacy as standard dose available commercially is 50 mg.
I have not been able to find any info on Kolcha13. Where do you get it?
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1 ReactionYes, i got it fer om compound pharmacy, but my doctor prescribed me 1g daily.
About kolcha13 i found it in Amazon, as i mentioned it works for my niece, she was diagnosed with psoriasis in other country, which i think is incorrect because she has similar symptoms that we, siblings have. I took 3 on my worst day of crisis, and next day i was dry. My sister tried glutathione which i ordered already. She told me in a week she was healed. I try to do everything that i heard is good. Because this is painful. My doctor yesterday took a sample to check if there is herpes because the acute pain. And to check if doxicyclyne is still working. I used to take it for almost two years, twice every day, which made me think I'm resistant or my body is. I told that to my doctor, and she mentioned is a valid doubt.
I hope you are doing well
Hello, the lab of kolcha 13 is Seven Forest. I’m taking prednisone caps, and she prescribed triamcinolone acetonide cream. I’m getting better
Now the lab results mentioned there is pseudomona aeriginosa, then I think they are going to change the antibiotic. There is a green secretion in my underwear, and I mentioned it to the doctor. They act super slow, the test was done two weeks after I mentioned that.
Hello,
I found a researchers group who found some results about HHD in a multi study of cases. I offered myself as a volunteer to provide more information about this illness for future studies.
Maybe you can add yourselves and write to them to see if we can find an open door to start a continuation study. This, HHD is a weird and orphan illness and the number of cases is low in incidence, but we are together and they can continue with studies to find an effective treatment.
Is in Germany, this is the contact information, please write, and describe your symptoms, attach a picture and show your interest in participating.
Thanks
Ángela.
Klinik für Dermatologie, Allergologie und Venerologie
Haus B 9, Ratzeburger Allee 160, 23538 Lübeck
Tel.: 0451 500-41550, Fax -41554
And their email address is:
ambulanz.hautklinik.luebeck @uksh.de
This is Dan and I am 76 and live in Florida. I have had Hailey Hailey since I was about 22. My mother got it from her father, then I got it from my Mom. 8 children, 6 brothers and 1 sister. 6 of us guys got it (pretty bad). When I got it so bad on my back, very large patches of the blisters which sometimes would cover half my back and under my arms, I would take a prescription of erythromycin from my GP. That is the only medicine that would clear it up in 10 days. I worked in the hospital at the time and the one of the doctors did a biopsy of one of the sores. Of course it came back as benign familial pemphigus (Hailey Hailey. Although my mom had it her whole life, she never new what it was. As she grew older it did get worse at times. Now this is happening to me it is affecting my head and my face and my neck. I feel like my head and my face is burning up. My face is very red, like an extreme sun burn, then my Face peels. I do get cream from my dermatologist. This is happening more frequently. Does this happen to anyone else?
This is Dan, my Mother used to get the HH on her upper stomach and under her breasts and I know that she ended up in the hospital for two weeks because she got a secondary infection in the blisters. Married 55 years and we have 2 daughters which both of them have it. Our youngest daughter Eliminates most of the sugar out of her diet, and she stays out of the sun as much as possible, because the sun, sweating and the heat makes it worse. Clobetasol Propionate Topical Solution USP .05% does help. Apply as soon as you see the blisters. It is a prescription. Good look.
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2 ReactionsHi this is Dan, both of our daughters have HH and they both watch they diet. We live in Florida and it has been very hot. Each of them, like me, have had good years then very bad times when it flares up. One is 48 the other 50 years old. Definitely see your Dermatologist on a regular basis. This has been in my family for generations. My mom really didn’t even know what she had. God Bless you and I hope you get relief.