Part 1: Genetics and (Mis)Diagnosis

According to the National Eczema Foundation, 30 million Americans are afflicted with the itchy, red, blistery skin condition medically referred to as atopic dermatitis, but better known as eczema. Eczema affects people of all races, ages, and gender. While it's not typically a life threatening condition, it can impair quality of life for its sufferers with a great deal of discomfort and social anxiety. As a life-long sufferer of eczema, I've dealt with days where flare-ups on my hands that were so painful that I've had to use sick days from my office job on the computer. I can't even imagine what an impairment this condition could become in trades requiring more intense physical labor.

If you've landed on this page, chances are you want to learn more about this condition. What I'm going to share in this series of blog posts is my findings on how to manage eczema, which I hope you will find useful too.

Is it eczema or a single episode of dermatitis?

I've had eczema since I was 5 years old, beginning as two itchy, dry patches of skin on the inner bend of my arms. The first few times my mom took me to the family doctor, I was given a cream to apply to it and told not to scratch. Scratching avoidance never seemed to make a difference for me - I would get the rash no matter how hard I resisted the itching. As a patient, being told not to scratch is upsetting because it can feel like you're being blamed for making it worse even though you know that has little to do with the cause.

As a kid most of the time I would just put up with the discomfort and accepted it as part of life. I thought maybe it was just something everybody deals with, especially during the winter in Chicago. I remember in high school one day a classmate sitting next to me saw me roll up my sleeve and start scratching the inflamed, dry flakes on my arm. "You really need to put moisturizer on that!" she said.

Steroid medication always made the skin heal up for a while, but it wouldn't be long before the problem would return. I would go back to the doctor on occasion during times when the itching would become unbearable. When I was a teen we started seeing a new family doctor and every time he would see my rashes on my arm or hands he would say "That's contact dermatitis!", prescribe the same steroid cream, and the cycle continued. It wasn't until we got the Internet in my home that I Alta Vista'ed (because Google wasn't a thing yet) my symptoms and found websites full of information about this skin problem. For the first time I had an answer as to why I kept getting itchy, flaky, red rashes in the same spots on my skin - it was eczema and the Internet was full of stories similar to mine.

I think that the episodic nature of our healthcare delivery system causes people with non-life threatening chronic problems like this to fall through the cracks until the situation gets severe. After a little over 10 years of doctor visits, not once was I ever diagnosed with "eczema". It seems typical for the run of the mill family doctor to treat each flare-up of eczema as an isolated case of skin irritation, and miss the bigger picture. Your doctor probably doesn't live with this condition, and isn't there with you all day to take note of the lifestyle related things you do which could be making your eczema better or worse. He just knows that the prescribing drugs will work well enough to mask the symptoms and send you on your way for a while.

Medications may be useful for suppressing an eczema flare-up, but repeatedly taking this approach has diminishing returns. Steroid medications like triamcinolone are often the first line of treatment, but they can be hard on your body. Long term use can lead to the thinning of your skin. Injections of that medication can lead to harmful side effects like cataracts. Over time they may even become less effective and your condition will worsen. Given that, why not try to eliminate the cause rather than the symptoms?

From my experience I've learned that lifestyle factors are influential in managing eczema. Doctors aren't so well coordinated in educating you on this lifestyle angle because they can only base their decisions based on the information they've read in established medical journals, which is limited. It takes a lot of experimentation and observation to figure out the triggers for your particular case. Only you are in the best position to figure out what works for you, which may vary from person to person. If you are successful, you will save yourself a great deal of discomfort, expenses, and the harmful long term side effects of prescription medication.

Eczema and genetics

There is definitely a genetic component to eczema. Some of the medical sites I've visited cite one of the root causes as the FLG gene, which helps your body create certain proteins that waterproof the skin, thereby retaining moisture and keeping out substances that can cause irritation. People with a corrupted FLG gene do not produce this protein correctly.

As I learned more about this condition, I began to see links to my mother's health. My mom worked in the hospital as a lab tech and often had trouble with dermatitis on her hands. She would constantly use moisturizers and blamed the irritation on latex gloves. However, she would sometimes get more extensive rashes and go to the doctor for creams and sometimes shots to subdue the discomfort.

Later on I would have conversations with my mom about my grandmother, who passed away in the Philippines long before I was born. I learned that my grandmother also dealt with the discomforts of eczema, but on the back of her ankles. Given this information, it became apparent that my case eczema was a token of the genetic lottery from my mother's side of the family. My dad and his parents did not have any such skin problems.

The immune system's role in eczema

Although science offers some clues, I don't think medical research fully understands the mechanics of what causes full blown eczema. It's not just that some eczema suffers lack certain proteins in the skin. There is also an immune system component. A lot of medical research into eczema revolves around overactive immune system response, which causes the inflammation in the skin that leads to rashes.

I subscribe to the idea that because an eczema suffer's skin may be more porous, environmental irritants are more likely to get through the outer barriers and trigger the immune system to cause inflammation. This may be why so many doctors treat chronic eczema like they would a standard case of contact dermatitis (skin irritation/allergy) - because the body's mechanisms in causing both kinds of rashes is the same. It's just that a person with the chronic illness is much more sensitive to allergens and gets triggered more often.

Stubborn cases of chronic eczema could have multiple triggers, including a combination of allergens and pathogens. The porus skin of someone with the eczema gene is more susceptible to stealthy bacterial or fungal infections that produce eczema-like rashes. In such cases, taking a medication like fluconazole in combination with other medication can provide a great deal of relief and stomp out a persistent flare-up.

In the Part 2 of this series, I go into more detail about the allergy and pathogenic factors causing eczema. If you like this blog series and want to add to the discussion, please leave your feedback on the Disqus board below.