Just found my diagnosis today.

[Jacampbe]

I am a highly active runner and health conscious 44 yr old women. I self diagnosed as I haven't had any luck in the medical community with a diagnosis. Been having symptoms that match HHD to a T for 2 years. Many tears shed and much frustration and never a day without itching as I know many of you can relate to. We are on the road until June but I plan to get an appointment with my dermatologist when I return home to confirm my diagnosis with a biopsy. Had a biopsy in the past, but I don't think they were looking for a HHD diagnosis as that was never mentioned to me. I believe my mom has a mild version of HHD and that may be where my genetics came from; but she was never diagnosed. I have the longitudinal lines on my fingernails. I have asthma and allergies. I have cold urticaria as well which I just contracted a few years ago. I have several questions for the group:

1) how many of you have the longitudinal lines on your fingernails?

2) How many have cold urticaria and/or asthma/ allergies?

3) What if any suppliments/ and or dietary changes have helped to reduce symptoms of HHD?

4) Do any other women in the group get increased symptoms during menstruation or pre-menstruation?

Thank you for involving me in the group, Jennifer

[Jacampbe]

Follow up question: Anyone up on any gene therapy that could be helpful to reduce symptoms?

[Feelyourpain]

Hello, I will try to answer a few of your questions .First let me say that I have had HHD since I was about 45 it runs on my mothers side of the family .For your questions I do have the lines on only my thumbs not any of the other finger nails.And I do not have hives but some dye allergies. But HHD does cause watery blisters that you could be confusing as hives . I have found that drinking pop or soft drinks as some people call them since I stopped drinking them has helped me some .Being a runner heat and friction on the insides of you legs around the groin will be a major problem for you unless you are very luck and not have any out break there This is my major area .I have found that under my arms if I use secret deodorant it helps plug the pores and I do not have HHD in that area . I was told to use dove soap not sure if the helps but as you know we will grasp at anything that will help with this problem . I don't call it a disease because it really isn't it is a mutant ATP2C1 gene that is encoding a protein that acts as a calcium and magnesium pump in the cells .In short it is the cement that holds the skin cells together. I hoped I helped you a little .Do not hesitate to ask me any question I don't know much except what research I read on line and through my experience with this awful defect . I did see a doctor and she said that she has some good success with a medicine called Naltrexone .I tried to take it but it made me sick .What it is as she told me started off as medicine for opioid users to help them kick the habit so if you go on it you can not take any meds with opioid in them . So ask your doctor and see if he thinks it will help you . Good luck .Hope I helped.

[UASC in reply to Feelyourpain]

I have the lines/ ridges on my thumbnails too, that is because HH causes longitudinal lines on thumbnails only. If someone has the longitudinal lines else where HH is not the cause.

[Tracy5 in reply to Feelyourpain]

What type of secret deodorant did u buy?

[Feelyourpain in reply to Tracy5]

I use secret roll on not spray or powder.

[Tracy5 in reply to Feelyourpain]

What type of secret deodorant did u buy?

[UASC]

Hi, Jennifer I will answer your questions the best I can as a registered nurse and a person who sufferes from Hailey Hailey disease for over 20 years.

1) the longitudinal lines on fingernails that occur from Hailey Hailey Disease affect thumbnails only [i have them as well] if you have longitudinal lines on any other fingernail I would advise you to discuss it with your dermatologist as HH is not the cause.

2) I personally do not have any allergies, and I have never heard of a correlation between HH and allergies.

3) I nor anyone else in my family have had any luck with supplements or a special diet to reduce our HH symptoms. I will tell you that my particular disease is resistant to treatment..creams, ointments, and medications including Naltrexone do not help me and I must have my affected areas removed with a CO2 laser when I get a flare.

4) Not I or any other woman in my family has found a correlating factor with menstruation and HH flare ups.

Now to address your biopsy. Pathologist do not "look" for Hailey Hailey disease in the biopsied skin sample, it is just there plain as day. We, my fellow Hailey Hailey disease suffers, provide a skin biopsy that looks like Swiss Cheese under a microscope. When the pathologists look at our skin sample under a microscope it is literally falling apart. There is nothing to "look for" unfortunately it is very apparent that a person has Hailey Hailey disease.

I was suffering from Hailey Hailey for about 5 years before a dermatologist took 2 biopsy samples, one from my under arm and one from under my breast and there was my diagnosis. I am now 43 years old I to am very active and run 8 miles every day (in between my flare ups.) My dermatogist has admitted me to the hospital during flares, I have had a PICC line placed, I have had to have flares removed surgically because my disease is resistant to regular treatment. I have had to stop working. This disease drastically impacted my life.

Now about Hailey Hailey Disease running in the family.. You mention that your mother might have HHD. Yes it does run in the family with a 50/50 chance of passing the defective gene along to offspring. My great-grandfather on my mother's side[my grandmother's father] had Hailey Hailey Disease, my grandmother, her brother and both her sisters had Hailey Hailey Disease. My mother her sister and ALL of their cousins have Hailey Hailey Disease. Both of my sisters and of course me myself have Hailey Hailey Disease. My oldest son also has Hailey Hailey Disease.

As a health care professional I will caution you with "self diagnosing" And subsequent self treating that typically follows. It can be a dangerous thing to "Google" symptoms that you are having in liew of a proper assessment from a health care professional. If you are not satisfied with the treatment or outcome I suggest you visit a different practitioner until you are happy. As a cardiovascular ICU RN I have seen very bad things happen to those who seek Google over an actual Dr. That is all. Be safe and sound.