June 8 Itching for a Cure walk in New Jersey: it's not about you

The National Eczema Association recently announced the second annual Itching for a Cure walk, which will raise awareness and funds for eczema outreach and research. It will take place June 8 on the Monmouth University campus in New Jersey--essentially greater New York City. (Last year's walk was held in Asheville, North Carolina.)

The largest barrier for me, as an adult patient, to participating in such a walk--were one to be held in the area I live in--is embarrassment. Eczema is not a socially acceptable disease. It's there on your skin, sometimes your face, where people can see there's something wrong with you. And when it's not visible, that's a good thing. You want to hide it.

In this matter, there's a huge difference between a parent of a child with eczema and an adult patient with eczema. The mother or father of a child with eczema is not embarrassed. They are concerned and want to do everything they can to make their child better.

On top of the embarrassment factor, it seems a bit selfish, a bit like a panhandler, for an adult patient to take part in an eczema walk. Sponsor me, it seems to say, to raise money for a cure for me!

Mothers and fathers are ready to fight for their kids. They are not doing it for themselves. They will proudly take part in an eczema walk, and look you in the eye.

The absence of adult patients from Itching for a Cure is probably not a major factor. After all, eczema is predominantly a condition that children outgrow. But how might we convince adult patients, including me, to take part?

I think the key lies in altruism. It's not about you.

Let's face it--if you're raising money to increase awareness of the prevalence of eczema, or how it should be properly treated, or to fund research that might lead to a pharmaceutical cure--you are not doing it for yourself. There will be no cure for eczema in your lifetime. You are doing it for other people. Your grandkids, and millions of people you will never know.

It becomes a lot less embarrassing when you're doing it for somebody else.

And that is why if there is ever an Itching for a Cure walk in my area, I'll be signing up. I know exactly how shitty it is to live with this condition, and how important it is that other people be spared the torment and the embarrassment. It's not me I'll be doing it for--it's you!

Thumbs up for shea butter as a scalp moisturizer

In my ongoing search for a scalp moisturizer, I have a new favorite: shea butter.

I had heard about shea butter about for years. I hadn't tried it because it cost a lot and seemed a kooky natural product of dubious merit and uncertain quality control. But dry skin and eczema on my scalp is now my primary problem. For several months I have been coating my head with Aveeno Daily Moisturizing lotion and feeling like I'm wearing a rubber bathing cap all day. It works OK but leaves something to be desired as a hair product. So I was up for trying new things.

Then, I found a jar of shea butter just sitting around on my four-year-old daughter's dresser. She has eczema and my wife must have bought the shea butter and tried it out without me knowing. (Cue the eye-rolling on my wife's part.) Anyway, the stuff was no longer in use, she informed me, so, having already paid for it, I was free to try it out.

The brand was True Blue Spa Too Shea, if you're interested. $17.50 for 3.5 oz.

It goes on like actual butter--it's hard at first, but you take a bit in your fingers and it warms up and melts a bit. Then you rub it on your scalp and once it's on, it stays melted.

It works for me because I buzz my head with a 1/2 inch clipper attachment. So I am not wasting too much of it on my actual hair.

The feeling is a little greasy but not terrible. Plus shea butter is actually used as a hair product. Would you believe I had a compliment on my hair earlier this week? The first in a very long time.

I looked into shea butter. It comes from the nuts of the shea tree in west and central Africa. It's a complex fat and apparently there is a wide range in quality. Someone named Samuel Hunter recently created the American Shea Butter Institute, which could well be a one-man operation for all I could determine, to certify various grades of shea butter depending on their oil content, melting profile, impurities and "rancidity values." Shea butter is edible, and therefore goes bad like real butter. (But no mention is made of refrigeration.)

I can't recommend one type or brand of shea butter to use, because it's not clear what would make one better than another. You just wouldn't want it to be rancid, evidently.

I don't search out natural products, because I don't think they're necessarily any better than manufactured moisturizers and so on, but shea butter is the best solution I've found so far for moisturizing my scalp.

New NEA blog post. Why is the East Coast missing from the Eczema Map Project?

Check out my latest post on the blog of the National Eczema Association. I write about the Eczema Map Project and, in particular, what it's already taught me: that either I have a lot to learn, or there's not much happening on the east coast of the United States, which has traditionally been the power center for academia, industry, and medicine. Why is that?

The Eczema Map Project: the big picture

Something I've wanted to do for a long time is create a world map of all the major centers or points of interest for eczema patients, doctors and scientists.

Why? Because I feel that we're all largely isolated, even in the internet age. Especially with a disease that makes you want to stay away from other people. We can get on our computers and search for blogs or advice or therapies, but there's very little sense of belonging to a greater community. We don't know what's going on in the big picture.

And so I would like to introduce to you the Eczema Map Project, a work in progress. It is a map of the world marking the locations of key researchers, therapy centers, and patient associations.

I've decided to make the map a permanent tab on this blog, so I can update it continually when I learn about new people or developments.

The items on this map are those that I consider significant--game-changers, not just good dermatologists. But please feel free to write a comment about your dermatologist if you think he or she is above average!

You can see that at present the map is a bit USA and UK-centric. This could be for a few reasons. I largely operate in English, and I live in California, so I tend to hear about developments in the USA more than anywhere else. But it is true that the USA is a very large and well-developed country with some of the best medical care in the world (for those who can afford it--an issue I have strong opinions on, but which I am not going to get into right now). So it may turn out that more of the most important sites are indeed here.

But please tell me what is missing from this map. Is there a major therapy center or a patient association I don't know about? Leading scientists not there? Tell me, and I'll add them. Or, if you think an item doesn't merit being listed, let me know. Nothing is set in stone.

And have fun exploring the world map from an eczema perspective.



View The Eczema Map Project in a full screen map

Anomalies in the immune system of patients who have experienced eczema herpeticum

Scientists have discovered that eczema patients who have suffered an outbreak of eczema herpeticum possess a subset of T cells that appear to be less effective at fighting viruses than T cells in the rest of the population. The results, published online in the British Journal of Dermatology, may point to an impaired arm of the immune system, a weakness that enables the herpes simplex virus (HSV), the agent of eczema herpeticum, to thrive.

Eczema herpeticum (EH) is a nasty skin infection caused by the HSV. The researchers, led by Donald Leung at National Jewish Health in Denver, took T cells (specifically, the class of T cells that fights viral infection) from 24 eczema patients who had experienced EH. The scientists analyzed various aspects of the T cells, comparing them to T cells taken from control patients—with and without eczema—who had not been infected by HSV. The scientists found that T cells from the EH group were producing less of a signaling molecule called “interferon-gamma” than those from the control groups.

Interferon-gamma is known to play many important roles in the immune response, especially in fighting viral infections.

The researchers also tested the DNA of the patients and found that the EH group were statistically more likely to possess copies of genes encoding “HLA B7” proteins, which hold chopped-up viral fragments on the cell membrane as markers so that T cells can identify and destroy infected cells.

It seems clear to me that a lack of interferon-gamma might be a liability against viruses. (I wouldn't expect this deficiency to be an effect of EH infection rather than a contributing cause, but the authors don't discuss the possibility.)

Owning a copy of HLA B7 might seem to improve your ability to fight infection--especially since that group of proteins have been shown to present fragments of vaccinia virus. However, as Leung pointed out to me in an email, having HLA B7 didn't prevent many of the patients in this study from getting eczema herpeticum.

These results don't have any immediate application to helping patients, but the area they highlight might prove important in protecting patients from eczema herpeticum in the future.

This is the first paper I have seen that acknowledges funding by the Atopic Dermatitis Research Network. I am sure there are many more papers out there, but this is the first I have noticed since the inception of the $31 million program, founded in 2010 to explore skin infections related to eczema.