Well Being

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

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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.