http://www.dermatalk.com/blogs/skin-disorders/hailey-hailey-disease/ Skin Care Advice Sat, 04 Feb 2012 15:22:24 +0000 hourly 1 http://wordpress.org/?v=3.2.1 http://www.dermatalk.com/blogs/skin-disorders/hailey-hailey-disease/comment-page-1/#comment-4343 tracie Fri, 05 Aug 2011 04:56:12 +0000 http://www.dermatalk.com/blogs/?p=994#comment-4343 OMG...I have to tell everybody about this...I mean it is a miracle for me....A little about me...I have been battling Hailey-Hailey disease for the last 10 years and only knew it was Hailey-Hailey disease when my lesions were biopsied 5 years ago after finding out my father also had it and his father. I was devastated because the doctor told me that all we could really do was treat the symptoms and that the breakouts would stop in my 50s...well I am in my 30s, a young women, and from reading all of your posts it obviously doesn't just stop in your 50s!....The lesions I would get were huge....10 cm long, purulent, sticking to my shirt....the whole nine yards....I would get them especially bad on both sides of my neck (couldn't hide them) under my breasts, and in my axillae. I always had active lesions...sometimes they would start to heal but then get bad again and again, always starting out as what appears to be little blisters...then bam!....over the last 6 years it has been so bad...painful...like burns...been on everything...tacrolimus, vitamin D cream and supplements, dapsone, prednisone....etc, etc...nothing would stop them....Tried everything on this website....magnesium baths, bleach baths, whatever was new I tried....well I gave up on the Hailey-Hailey disease and decided I would forget about it and focus on my acne instead. Yep acne too....So I started reading the web and found alot of sites stating that if you want clear, acne free skin to go gluten free...then I started reading about other signs and symptoms you could get by eating gluten and realized that alot of those lesions looked like mine...now keep in mind my lesions were biopsoed several times and showed Hailey-Hailey disease with the acanthylosis (or however that is) etc...My dad was diagnosed with it when he was 30 and his dad while he was in Korea....Hmmm...I finally decided what the heck...I am miserable...I am going to go gluten free and see if it helps my skin at all....OMG...I cannot believe it..8 weeks ago I started this and I had two active lesions...one on my neck (4 cmX4cm) and a huge horrible, painful one under my breast that I have had active for about six months!!! Lots of acne....after day 2 of completely gluten free the itchiness was gone...and my lesions were already healing...I could not believe it and still cannot believe...My acne and Hailey-hailey lesions almost completely healed after 2 weeks....It is two months later and no sign of any Hailey-Hailey lesions....no itchiness, no blisters....no redness...and since going gluten free I have lost quite a few pounds....Going to the gym now...getting sweaty....Still no Lesions....I want you to understand that I always have had at least 2 active lesions at any given moment over the last 10 YEARS!!!! I wanted to wait longer to post this but I feel so good right now....I wanted to put it out there! I mean it costs nothing to try except your time to look at what you are eating carefully and cut out any possibility of gluten...I will post again in a few weeks to let you guys know how things are going...No I have not had one single smidge of gluten in the last 2 months!! not one! Please try it...what do you have to lose??? I mean maybe it is just a fluke in timing, but, I made a drastic change, and I am getting a drastic result!!! I mean I know we can get meds and everything...and we listen to what the docs are telling us but lets face it....Doctors do not know everything....Hailey-Hailsy disease is rare athough getting more common....please just try it and keep me posted on your success or no success...just do not cheat! OMG…I have to tell everybody about this…I mean it is a miracle for me….A little about me…I have been battling Hailey-Hailey disease for the last 10 years and only knew it was Hailey-Hailey disease when my lesions were biopsied 5 years ago after finding out my father also had it and his father. I was devastated because the doctor told me that all we could really do was treat the symptoms and that the breakouts would stop in my 50s…well I am in my 30s, a young women, and from reading all of your posts it obviously doesn’t just stop in your 50s!….The lesions I would get were huge….10 cm long, purulent, sticking to my shirt….the whole nine yards….I would get them especially bad on both sides of my neck (couldn’t hide them) under my breasts, and in my axillae. I always had active lesions…sometimes they would start to heal but then get bad again and again, always starting out as what appears to be little blisters…then bam!….over the last 6 years it has been so bad…painful…like burns…been on everything…tacrolimus, vitamin D cream and supplements, dapsone, prednisone….etc, etc…nothing would stop them….Tried everything on this website….magnesium baths, bleach baths, whatever was new I tried….well I gave up on the Hailey-Hailey disease and decided I would forget about it and focus on my acne instead. Yep acne too….So I started reading the web and found alot of sites stating that if you want clear, acne free skin to go gluten free…then I started reading about other signs and symptoms you could get by eating gluten and realized that alot of those lesions looked like mine…now keep in mind my lesions were biopsoed several times and showed Hailey-Hailey disease with the acanthylosis (or however that is) etc…My dad was diagnosed with it when he was 30 and his dad while he was in Korea….Hmmm…I finally decided what the heck…I am miserable…I am going to go gluten free and see if it helps my skin at all….OMG…I cannot believe it..8 weeks ago I started this and I had two active lesions…one on my neck (4 cmX4cm) and a huge horrible, painful one under my breast that I have had active for about six months!!! Lots of acne….after day 2 of completely gluten free the itchiness was gone…and my lesions were already healing…I could not believe it and still cannot believe…My acne and Hailey-hailey lesions almost completely healed after 2 weeks….It is two months later and no sign of any Hailey-Hailey lesions….no itchiness, no blisters….no redness…and since going gluten free I have lost quite a few pounds….Going to the gym now…getting sweaty….Still no Lesions….I want you to understand that I always have had at least 2 active lesions at any given moment over the last 10 YEARS!!!! I wanted to wait longer to post this but I feel so good right now….I wanted to put it out there! I mean it costs nothing to try except your time to look at what you are eating carefully and cut out any possibility of gluten…I will post again in a few weeks to let you guys know how things are going…No I have not had one single smidge of gluten in the last 2 months!! not one! Please try it…what do you have to lose??? I mean maybe it is just a fluke in timing, but, I made a drastic change, and I am getting a drastic result!!! I mean I know we can get meds and everything…and we listen to what the docs are telling us but lets face it….Doctors do not know everything….Hailey-Hailsy disease is rare athough getting more common….please just try it and keep me posted on your success or no success…just do not cheat!

]]> http://www.dermatalk.com/blogs/skin-disorders/hailey-hailey-disease/comment-page-1/#comment-4251 Sue Bulger Wed, 27 Jul 2011 14:06:22 +0000 http://www.dermatalk.com/blogs/?p=994#comment-4251 I too suffer from Hailey Hailey disease since my early 20's. I have the same type of purple scaring after the lesions go away. If anyone knows of a good treatment for this I'd love to hear them! I have taken oral antibiotics and steroid creams but right now I'm suffering badly. I too suffer from Hailey Hailey disease since my early 20′s. I have the same type of purple scaring after the lesions go away. If anyone knows of a good treatment for this I’d love to hear them! I have taken oral antibiotics and steroid creams but right now I’m suffering badly.

]]> http://www.dermatalk.com/blogs/skin-disorders/hailey-hailey-disease/comment-page-1/#comment-3081 Missmas Wed, 20 Apr 2011 05:14:45 +0000 http://www.dermatalk.com/blogs/?p=994#comment-3081 I suffered from Hailey-Hailey disease since November 2008 till now. What treatments other than the use of steroids? Whether the disease will be cured? I suffered from Hailey-Hailey disease since November 2008 till now. What treatments other than the use of steroids? Whether the disease will be cured?

]]> http://www.dermatalk.com/blogs/skin-disorders/hailey-hailey-disease/comment-page-1/#comment-2261 kiki Fri, 23 Jul 2010 17:47:26 +0000 http://www.dermatalk.com/blogs/?p=994#comment-2261 It does scar.Especially noticable after getting out of a cool shower or swimming.Big purple outline of the once "flared up" It does scar.Especially noticable after getting out of a cool shower or swimming.Big purple outline of the once “flared up”

]]> http://www.dermatalk.com/blogs/skin-disorders/hailey-hailey-disease/comment-page-1/#comment-2178 Keratosis Follicularis | DermaTalk.com Sat, 26 Jun 2010 15:28:25 +0000 http://www.dermatalk.com/blogs/?p=994#comment-2178 [...] Finger nails change shows red and white longitudinal bands, longitudinal nail ridges and longitudinal splitting. Finger nails becomes fragile. Other additional symptoms and signs may be present in some cases. Atypical presentation and coexistence with other disease may be common. It can coexist with chronic familial pemphigus ( Hailey-Hailey Disease ) [...] [...] Finger nails change shows red and white longitudinal bands, longitudinal nail ridges and longitudinal splitting. Finger nails becomes fragile. Other additional symptoms and signs may be present in some cases. Atypical presentation and coexistence with other disease may be common. It can coexist with chronic familial pemphigus ( Hailey-Hailey Disease ) [...]

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