Putting Hidradenitis Suppurativa Into Remission
I have had a condition called Hidradenitis Suppurativa (HS) for over 20 years. Never heard of it? I’m not surprised. It’s the Leprosy of the 21st century. HS sufferers will inadvertently break out in boils and cysts in delicate areas of their bodies – armpits, groin, buttocks, upper thighs – which can take months to heal. It looks like the worst STD you’ve ever seen. HS isn’t contagious, but it is painful – and embarrassing. The fact that you haven’t heard of HS before now isn’t surprising at all. I didn’t even tell my parents about it until last year. What is surprising is as soon as I opened up and admitted that I had it, so did a bunch of other people:
One of my best friends. My hairdresser. A colleague. Relatives. Countless anonymous comments from all over the world on my blog. People desperate for help, desperate to just put a name to the condition that they have been plagued with for years, a condition they have kept quiet about. Desperate for a treatment so they can finally stop suffering and start living.
Even if you don’t have HS yourself, I guarantee that you know someone that does. We hide it. We’re the ones that don’t go to pool parties or sleepovers when we’re young. We’re afraid of being intimate as we get older, we don’t wear tank tops and we might miss a lot of work. You may notice us wince when we sit down, but you’ll never hear an honest reaction; our screams of pain would drown out all conversation in a room if we let them out.
I have seen numerous doctors over the years for my HS and none were helpful at all. Most didn’t know what it was. Some even suggested that the disease was my fault. Since they didn’t have a drug to fix it, it must somehow be my doing. Over 1 million people in the US have been diagnosed with HS, but experts estimate there are over 12 million in the US alone who don’t have an official diagnosis.
Doctors don’t have a treatment plan for HS. The only option a dermatologist can suggest is a daily course of antibiotics for the rest of your life, antimicrobial body wash and surgery if the lesions become too painful. These treatment options are not effective at all. In some people, antibiotics seem to work for a month or two, but then suddenly stop working. Now they have HS, IBS and a compromised immune system. Hooray!
When I turned to a Primal diet, I had a huge reduction in the number of flare-ups I was having. It seemed to me that I was on my way to recovery. I was convinced that the HS was somehow caused by sugar. However, 2 and a half years into my Primal journey, I was still having outbreaks occasionally. I couldn’t explain them. It was then that I went to the dermatologist and was told that HS has no cure and that I would have to suffer for the rest of my life no matter what I did.
I decided to ask Loren Cordain about HS when I interviewed him at the AHS last summer. He mentioned that he thought HS might have an autoimmune component but other than that, he didn’t have any information. The fact that he had heard of it at all was reassuring. Plus he had mentioned a very pertinent word: Autoimmune.
Autoimmune condition. Autoimmunity. Autoimmune protocol.
It’s easy for those of us in the Paleo community to forget there may have been a time when we didn’t understand what those terms meant. An autoimmune condition was Multiple Sclerosis or Lupus. It was serious and sometimes fatal. No one had a cure. All we could do was hope and pray that we didn’t fall victim to Fate.
It’s also easy to forget that traditional doctors don’t know much about autoimmune conditions, either. Sure, we realize that they don’t know much about nutrition and its impact on health, but deep down we frantically hope to whatever Gods we pray to that they know something. When we have a serious condition or an emergency – something that stops us from living our lives – it’s usually to a doctor that we will turn.
Could getting rid of a disease I had been suffering from for over two decades be that simple? I had heard Robb Wolf talking about autoimmune conditions on his podcast, and I knew that he had an autoimmune protocol on his website. Since I was already mostly Paleo, I immediately started cutting out potential hazards, starting with dairy and nuts. No change. During this time, I discovered that my children’s psoriasis was caused by nightshades. I eliminated all nightshades from the family’s diet and…that’s all it took.
My kids haven’t had a psoriasis flare-up for over 6 months. The last HS outbreak I had was on October 22 of last year. It was also the last time I ate potatoes. I have managed to keep my HS in complete remission for over 5 months by just avoiding a single food group. A food group that has itself deeply entrenched in the Standard American Diet – and even the diet of some of the most devout Paleo followers.
I believe that through self-experimentation and elimination I have proven that Hidradenitis Suppurativa is an autoimmune condition. It is not caused by bacteria or sugar and it cannot be cured by putting salves, herbs or creams on the lesions – or even having the lesions carved out of your body. It isn’t tied to menstrual cycles as is commonly believed (men have it too, after all) nor is it caused by wearing bras or polyester underwear. There has been some discussion connecting HS to smoking. Sure. Tobacco is a nightshade.I smoked for years – that may have been what caused it to appear in the first place. I’ll never know now, but it doesn’t really matter.
I have been in remission now for so long that even my scars have faded – something I never thought would happen. I have also managed to figure out how each individual fruit or vegetable in the nightshade family affects me. Tobacco = hangover and IBS. Tomatoes = canker sores. Peppers = cystic acne on head and face. Potatoes = HS boils. (Eggplants = I don’t know, they are so disgusting I can’t bring myself to eat them ever again, sorry. I won’t be doing further experimentation with tobacco, either.)
Please check out my first blog post about HS so that you can potentially help someone with this condition. There is a lot more to it than just applying treatment. I myself considered suicide on more than one occasion. Even now, I liken this to “coming out of the closet.” I am airing my most closely guarded secret for the whole world to read, in the hopes that I can help just one other person avoid the emotional and physical scarring that HS can cause. I want to raise awareness about this condition and the fact that there IS an effective treatment. You don’t have to suffer.
In a second post, I discuss how I came to realize what my triggers are and how you can find yours by following Robb Wolf’s Autoimmune Protocol. I have also included some pretty gruesome pictures of HS that I found online. Please check them out. I’ve talked to people who actually have Stage 1 HS but thought it was just “lumps” that came and went.
Nightshades turned out to be my trigger, but it won’t be the same for everyone. By following the Autoimmune Protocol, you can figure out which different food groups affect you – and which ones don’t.