Monday, May 13, 2013

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!

13 comments:

  1. I don´t know how old you are, but I think you have a rather pessimistic view of science if you truly believe that there will be no eczema cure/effective treatment within your readers´ lifetime. (Of couse, I do think that realism is important to help us keep our feet on the ground while waiting for a miracle..)

    Using cutting edge technology like NGS, I believe that scientists soon will discover additional eczema genes. This doesen´t mean that the job is done once the targets are discovered, but without novel drug targets, novel treatments will never be developed.

    Currently, there are, as we all know, no eczema cure. As a non-scientist, I think this is due to the recent change in the paradigm of AD. (Filaggrin, skin barrier etc.). I believe that this new insight into the pathogenesis of the disease may prove helpful, also in AD that is not caused by currently known genes. AD is not a disease that is neglected by science or pharma. (Even through it certainly feels that way sometimes).

    I don´t want to spread any false hope, I am very familiar with the physical and psychological burden of eczema, and i don´t think anything will happen in the next few years, but I also think that telling your readers that there will be no cure within their lives, is underestimating the power of science.

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  2. I will be happy to be proved wrong!

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  3. But do you think that AD is harder than other genodermatoses, such as EB and PC, to cure/treat effectively? If that is the case: why do you think so?

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  4. Ha, I admit ignorance here. I don't know what EB and PC are. I am a one-trick pony, and AD is my trick.

    The comment by Anonymous #1 (are you the same person?) made me think, and I'm working through some new posts on this topic.

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  5. I think that AD is harder than epidermolysis bullosa or pachyonychia congenita because I think it is not just one disease...AND it is probably not a genodermatosis in the strictest sense. That is to say, there are probably a number of mutations that can predispose folks to AD, but then environmental triggers that set it off... Thus it is a much more complex situation. Sadly, we can't even fix EB or PC and they *are* genodermatoses in the strictest sense. :(

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  6. Spanish key: #1 and #2 is the same person,and it is me again. My point is that academia didn't have a clear understanding of the mechanisms behind eczema until 2006. AD was considered as a immunologic disorder. Now, as far as I know, the dominant hypothesis is that a leaky barrier allows allergens to enter the body through the skin early in life, and thus priming the immune system to react
    to these allergens. This priming may result in asthma, when the same allergens enters the body through another channel, the lungs. So, AD has gone from being seen as a immunologic disorder that affects the skin, to a skin disorder that affects the immune system. This insight has started the hunt for other barrier components than flg, and this hunt is believed to become less time consuming than previous methods such as candidate gene analysis and genetic linkage, due to the use of NGS. The reason that I brought PC into the discussion, is the fact that this ultra rare disorder hopefully will be cured/well treated in not to many years, using siRNA, and thus showing the potential of the whole process of gene hunting and correction. Based on this, I think it is a bit over the line to say that we will never see a cure for AD. I don't think that it will be available for many, many years, and I won't believe it until I see it,but that is only because I suffer from eczema myself, and therefore it is "to good to be true". Objectively, research has come a long way the recent years. Anonynymous #3: I agree, eczema is a complex disease. But given the belief that it is initially caused by a barrier defect, I do believe that fixing the barrier may have therapeutic effect. That said, I am NOT a professional, and all in this post is based on my own reflections about this subject. (And quite a bit of reading.)

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  7. You seem to know as much as I do!

    I am somewhat familiar with immunology. The major problem with AD is the allergic component, I think, which gets locked in in the first couple years. Then, in older child and adult patients, you have antibody memory that there's no simple way to get rid of.

    Intense barrier protection in the first couple years might be a partial solution--Eric Simpson at OHSU has a small trial going on this.

    Also gene therapy hasn't even entered infancy yet. Barring unforeseen miracles I don't see it happening for generations. Hence my pessimism about the timeline. And yet--if we don't push for a cure, it is unlikely ever to happen for anyone.

    Thanks for your thoughtful comments.

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  8. Very well put. As an parent of a child with eczema, I hadn't thought about a walk like this from your shoes, but I can now understand your point. Regardless, it's not about you or me really, as you said. I'm proud to support the cause through my company and hope to be able to walk for the cure one day!

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  9. I agree, SK. To cure the whole atopic march, barrier enhancement would have to be applied early to prevent the other atopic outcomes. But in adults, such treatments could at least stop entry of allergens through the epidermis, and thus prevent inflamed and infected skin. The other other atopic outcomes is it probably to late to handle through barrier enhancement. I think we agree on the mechanisms behind AD and potential treatments, but not on the time horizon. The good thing about the high frequency of eczema sufferers, is that much attention is drawn towards this area.

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