Chronic Health Conditions: How I Learned to Control My Hailey-Hailey Symptoms

A mild Hailey-Hailey breakout on the back

Last week I kicked off our new series about living with a chronic health condition by giving you all the gory details about a genetic skin disease called Hailey-Hailey. I’m following up with that today, so that next week we can focus on a different (yet equally challenging) health condition.

Skin disease are tough, for the obvious reason that it’s very difficult (yet often essential) to hide them on a daily basis from strangers, friends, family, neighbors, co-workers, and the world at large. So much so that trying to conceal a nasty, bloody, scabby, and pus-filled disease like Hailey-Hailey can often become a full-time job in and of itself. (Gauze pads, bandages, and cotton undershirts and shorts that will surely get ruined are a part of daily life for many HHD sufferers.)

But I neglected to mention a few other things I’ve tried over the years in my attempts to lessen the symptoms of Hailey-Hailey. How could I forget the self-prescribed vitamin regimens (evening primrose oil, oil of garlic, oil of oregano, etc.) and all those emergency hydrocortisone shots in the dermatologist’s office? (The latter being a temporary fix.) Many HHD sufferers swear by a steady diet of vitamins to help keep their skin clear, and I’ve no real reason to doubt them. However, I can’t say that taking vitamins has always kept my HHD symptoms at bay. Unfortunately, what works for one patient, doesn’t always work for another. Personally, throughout years of experimentation, I’ve found that what I eat (or don’t eat) most directly and dramatically affect my Hailey-Hailey symptoms. Now, many dermatologists don’t want to hear this observation from a patient, because then they’d be out of a job. In fact, I’ve had dermatologists actually tell me that in no way does what you eat have any affect on the skin whatsoever. So, food and drink, which are essential to life and affect every internal organ, have absolutely no connection to the body’s biggest organ, the skin? Sorry, docs. Not buying it.

Sadly, my own personal food culprits (and ones I believe affect most HHD sufferers, even though many of them don’t want to believe it), are some of the things I love to eat and drink most in life. Refined sugar is #1. Of course, I know full well that sugar isn’t good for anyone’s health (with its links to diabetes, heart disease, depression, etc.), but it’s especially hazardous to my HHD. It exacerbates my symptoms (blistering! skin splitting apart! open sores!) every single time, often very quickly. My acupuncturist, Anne Mok of Cornerstone Healing in New York, claims that sugar “heats the blood,” which in turn makes any skin issues (including HHD) bubble to the surface in an attempt to be released from the body. (That’s obviously the unscientific version of what happens.)

During those rare times that I’ve been completely Hailey-Hailey-free, here’s what I’ve completely given up eating and drinking, in addition to refined sugars: Caffeine, red meat, bread, dairy, gluten, shellfish (a recommendation from my acupuncturist), and all processed foods. That means no booze – yes, it’s made of sugar – ice cream, candy, cakes, pies, cereal, regular pasta, shrimp, oysters, clams, cheeseburgers, toast, french fries, onion rings, and milkshakes.) What did that leave exactly? Pretty much just fruits, vegetables, salad greens, eggs, plain yogurt (one exception to dairy rule), white fish, chicken, turkey, beans, gluten-free pasta, nuts, olive oil, vinegar, herbal teas, and water. I also tried to sleep at least eight hours a night and do some light exercise at least three times a week. Did I lose weight? Hell, yes, I did, but that wasn’t my objective. The first time I attempted this dietary experiment back in 2004 (And no, I didn’t consult a doctor beforehand, which was wrong of me. Do as I say, not as I do.), I was in the midst of one of my worst HHD breakouts in ten years. Within a week, I noticed some positive changes going on with my skin, but I didn’t get my hopes up. Another week went by, and my Hailey-Hailey scabs were drying up and fading away. By the end of three weeks, my HHD symptoms were completely gone. My skin (back, neck, chest, upper arms, underarms) was finally clear. Joy ensued. Life changed. I wore tank tops and bathing suits without worry. I slept better. I looked healthier. I felt better. (Have I mentioned that a skin disease like HHD can often lead to debilitating depression?) My libido increased. My stained t-shirts were tossed. I was more pleasant to be around. I wanted to dress up and socialize with people. Most importantly, I wanted to keep this whole thing going.

The problem is (and continues to be), because there’s no magic pill to eradicate HHD symptoms, staving them off takes work. Real work, every day. HHD sufferers need to be diligent and disciplined every hour of every day if they want to successfully manage the often soul-crushing symptoms. We can’t eat or drink what the rest of the world does and expect our HHD symptoms to just not show up. That’s where it gets hard. Have I been able to stick to my hardcore 2004 healthy eating plan every day since it began? Nope. I have good months and bad months, as far as HHD is concerned. But at least since my grand experiment, I’ve known what some of my personal triggers are – but whether or not I choose to avoid them is solely up to me.

I live with Hailey-Hailey and I always will. (And I’m currently pregnant, so my child may have to as well; HHD sufferers have a 50% chance of passing on the disease to their offspring.) Which reminds me, the raging hormones of pregnancy are no friend to HHD; my symptoms are worse now than they’ve been in more than two years. We’re talking full-blown breakout here – all over the back and chest. But I’d heard that this would happen, so at least I was expecting a flare-up.

But just because I live with Hailey-Hailey, doesn’t mean I have to let it define who I am. Aside from battling my fierce HHD symptoms like a wounded warrior, that’s the real challenge I confront every day.

What chronic health conditions would you like to read first-person accounts about on Blisstree? Let us know in the comments section, below.

Share This Post:
    • Jo Dennis

      Wow – talk about hitting the nail on the head! This sounds exactly like me …apart from the pregnancy :-). Good luck with the new bub, and of course the HHD which I agree, does NOT define who we are. Looking forward to exploring your website.

    • Connie in Canada

      Both this post and your first one are the perfect description of HHD to show family and friends who can never figure out why we “moan” (from pain) when we move! What a great job you have done of describing how a Hailey Hailey sufferer feels. I for one am intriqued by your writing capabilities and will be subscribing to your newsletter. Keep up the awesome work!

      • Christine Egan

        Hi Connie. Thanks so much for your comment and welcome to Blisstree! Best, Christine (Editor-in-Chief)

    • Leanne

      Just as I have ALWAYS thought! I knew there were triggers in my nutrition and lack of vitamin intake. When I was on my vitamins ( Advocare) I had no outbreaks! And I mean NO! I was a soccer coach, personal trainer and soccer player in my early 40′s! I was sweaty..ooooh! and had to wear tighter clothes like sports bras. Now I am not doing all of those things. I have been lazy with my vitamins, and my sports bras are my enemy as I get severe outbreaks under my breasts and under my arms. I have not taken quality vitamins in a while. My diet is good, but it does include the occasional white sugar and wine. TWO serious culprits. I have spent hundreds of dollars over the years in doctors visits ( useless) and cremes, shots etc. I do fear that my children will inherit this demon, and they fear it too.

      Has anyone actually tried the previosly discussed bleach additive in the bath? Do let me know.

      So for now. NO processed food, No more booze, or sugar, and I’m calling Advocare to get back on my vitamins!

      Good luck to me and YOU!!!

      • Richard

        I would appreciate knowing what specific vitamin from Advocare you were using when you did not experience any HHD outbreaks – thanks

    • Julie

      I too have Haley-Haley. I have been battling this disease for about ten yrs now. I have been to the dermatologist many times only to have little relief. Just recently I had a yeast infection. I have been taking Epsom salt baths which has helped and also been loading up on the yogurt once again. I am doing much better. I have been using tea tree oil on the spots where there is yeast and this has definitely helped. I was wondering from Leanne which Advocare vitamin you use. I work in the health care field and this would help me. I sweat constantly and wear all types of shirts that wick away the sweat but still have problems. If you could let me know I would really appreciate it. :-)

    • Heather

      I have Hailey-Hailey as well ( had it for 18 years) and I loved this post because I describes me to a T. There’s a huge sore on my back right now that’s giving me grief, but I still have three kids to take care of, and a life to live. I sure hope they don’t get this “curse” as I call it.

      Thanks for the post and take care!

    • Carolann

      I am so relieved after reading your post. For the past 2 months I was off of gluten and dairy and there was no change with my HHD. After talking to my trainer she suggested the “Cave Man” diet. I am willing to try anything at this point. Then she e-mailed me your post. I felt like I was reading about my life. From the doctors telling me diet has nothing to do with it to the stained T-shirts. I feel fortunate because I only get it under my breasts but I am in my worst break out I have ever had (3 1/2 months) so after reading your article I feel like there is a light at the end of the tunnel. Thank You!!!!!!!

    • Kim Bennett

      I have had hhd for the last 10 years I have tried creams,pills everything but I have never really focused on my diet I am right now battling a very bad outbreak under my armpits and my leg groin area under my breast, I do not want to go or do anything if you could give me more information on the foods that you eat that would be great
      Thank you

    • Damian Boreham

      After this weekend with my future wife a hhd sufferer its been a nightmare …..I’ve helped bath her feed her and dress her she is currently in hospital for yet more treatment ! And at this point we would try eating cat food to help the pain go away …..what vitamins is it you all recommend please please let me know ASAP many thanks ..my heart goes out to you all ..no body deserves this

    • Kim

      I have also learned to take Olive Leaf Extract. And I do eat alot of Activia. Activia controls the yeast in my body, that my doctor said the HHD feeds on. It also helps with stomach problems. I was constantly getting bacterial infections on top of my HHD and would have to take antibiotics (which all women know what happens when you take them) you get a yeast infection, then have to take Diflucan to get rid of yeast. Then I read about Olive Leaf Extract. It helps with so much more. I found that taking it not only helped with the pain, but also with the yeast and my heartburn. I don’t know if it will help others, but if Jesus recommends the olive leaf for healing in the Bible, then I think that’s good enough for me. Be sure and read all the articles at http://www.oliveleafextract.com/history. There is a “die off” effect that clears the toxins out of your body, but you feel like you have the flu for a couple of days. Of course, like you, I have to watch my diet and over Christmas didn’t do that and got the worst case of HHD, it brought boils on my legs. Hope this may help.

    • Richard Robinson

      I’ve had HHD all my life – but it was not identified by a dermatologist until I was almost 40 years old. I find that certain foods (chocolate, sugar and nuts) certainly cause flareups and promote HHD outbreaks. Dermatologists have universally laughed at my suggestion that chocolate, sugar and nuts trigger HHD outbreaks. I’m greatly appreciative of the suggestions and experiences of others who suffer from HHD.

    • leanne

      I am sorry that I have not visited this site in a while as I see I had comments to my HHD post. Advocare and a newer company Genesis Pure have amazing liquid vitamins and supplements. The biggest factor is your liver ! Make sure you try a liquid detox for your liver. Genesis Pure has one called liquid cleanse. Let me know if you want more information on that. Diet is the biggest culprit for me. I am currently reducing another huge round of prednisone, as I have had to resort back to the med’s after some serious family stress. So here we go…no nuts, chocolate and wine. All have proven to have negative affects on my HHD!

    • cysoh

      I’m also having Hailey-Hailey skin disease . What you said is really true. I was away from home because of study so no choice, I’ll have to take outside food. But my diet is actually considered healthy because I seldom eat fried food and I don’t take “soft drinks” . I experienced that taking quite sometimes fast food (including soft drink or beverage that contains high sugar level) and turned out I got break out quite often! (but stress is one of the culprit too) Btw, healthier life always make you better. So when my sis told me about what the doctor said that food is not affecting the breakout. I meant “bullshit”, if we don’t eat good , live healthier, our organs will age very rapidly, the blood circulation and our skin’s condition will get worse too.