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| Voov, Spanish Key (in disguise w/ late-phase Miles Davis wig), and a concerned-looking Julie Block, CEO of the National Eczema Association, at the nonprofit's HQ in San Rafael. Like the logo on the door? It's part of the NEA's recent rebranding effort. |
Voov inherited my genes for eczema. She gets it on her hands--red, crusty inflammation and cracks that won't heal. But she's good-spirited. During today's summit she entertained herself with Julie's collection of binder clips and colored markers, and afterward sang "Jingle Bells" most of the way home.
Julie and I had a great two-hour conversation about eczema science writing, blogging, social media, and nonprofit fundraising. We agreed that eczema is covered only very shallowly in the mass media, despite 20% of children being affected and 2-3% of adults. There's a need for information about causes and treatment. Likewise, the blogosphere has very few voices covering eczema. On the web in general, overly commercial sites touting treatments of dubious worth tend to dominate. By contrast, the NEA provides a credible forum on its website where patients and parents can go to get scientifically valid information about eczema. Julie is particularly proud of the NEA's Facebook page, which enables them to engage almost in real-time with the community; she's happy, though, that a number of more conservative (not in the political sense) users tamp down the emotion and opinions that eczema can churn up.
Supporting basic and applied eczema research is a priority for the NEA, which offers a limited number of grants at the smaller end of the spectrum (around $100k). Julie points out that winning such grants, from a patient advocacy organization, can make a scientist's application for larger grants much more attractive to the NIH. In my day job, I also see the effect that "smaller" grants can have if given at the crucial precommercial stage where a scientist is doing experiments to validate research before spinning off a company. It's with the broad goal of raising donations for the NEA to fund research that I'm going to be writing blog posts for the NEA website (probably every month or two). As I do on this blog, I'll be covering recent advances in the field, showing that the field is active: steroids, Protopic, and Elidel are not the best that science can do for eczema patients. Things will get better in the future, and it's up to people like us to make it happen sooner rather than later.
(What's up with that wig in the photo? The NEA shares office space with the National Alopecia Areata Foundation, which has a surplus of wigs generously donated by Revlon. I'm balding and wanted to feel, just for a moment, what it was like to have a glorious head of hair.)
The goal of NEA is to find answers for all who suffer from eczema. They are dedicated to augmenting research funding, new treatments, alternative treatments and a vast range of initiatives to improve the health and quality of life of eczema sufferers.
ReplyDeleteIf NEA wants answers..they sure don't look far for them as there is growing awareness that topical steroids are the number one problem with ongoing eczema. International Topical Steroid Addiction Network has tried to help them out and rescued many grieving parents from the eczema merry-go-round. Funny that NEA does not tell anyone that steroids could be a huge problem but maybe the fact that they are partners with Upsher/Smith pharma, maker of steroids has something to do with it?
ReplyDeletePerhaps more research should go into how the steroid creams actually can cause "steroid induced eczema". Check this out
ReplyDeletehttp://www.prweb.com/releases/topicalsteroidinduced/eczema/prweb9684675.htm
If you have "eczema" consider the treatment which gets a stronger and stronger prescription may be causing the symptoms to steadily increase.
The idea that NEA is in bed with big pharma is ludicrous. They list their donors here http://www.nationaleczema.org/about-nea/nea-alliance-partners and Upsher-Smith donated less than $25k last year. Big deal. From what I've seen in their newsletters, NEA considers all solutions to eczema on their own merits, including "alternative" medicine.
ReplyDeleteIt's pretty well known that steroid addiction can be a problem for a small number of patients. But for most people, moderate use of steroids helps control eczema flares. In my opinion, ITSAN is probably helping a few people out, but in general they are overhyping the problem.
Overhyping the problem? Spanish Key, your post was posted nearly four years ago at the very time I was trying to figure out what the hell was going on with me and my uncontrolled "eczema". Nearly four years later and 43 months being steroid free, my life has returned to normal after a living hell. There is no overhyping anything as thousands upon thousands of people are getting on the same boat. Topical steroid addiction is a serious problem that will get much worse until every doctor is aware of the future suffering they are slathering on their patients.
ReplyDeleteAlso, the idea that NEA is in bed with pharma, whether true or not, is NOT "ludicrous". The fact that pharmaceutical companies give money to the NEA at all is the exact definition of conflict of interest and as such erodes their credibility.