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
This is great! In Northbrook, Illinois is doctor Scheman and he's a godsend for those like myself with Allergic Contact Dermatitis - one of the forms of Eczema. He does very extensive patch testing and is very skilled at reading the reactions. He changed my life!
ReplyDeleteThank you! I will check him out. Good to have the info, esp about his specialty.
ReplyDeleteBTW in Nottingham and London the patient associations are there but they are hidden by the markers for the research sites. I need to figure out how to show both. Maybe I can cheat a little by putting in slightly wrong addresses.
ReplyDeleteTwo off the top of my head. I'll think of some more and get back to you.
ReplyDeleteEczema Outreach Scotland
Eczema Society of Canada
By the way, this is great!
Jennifer
A few more....
ReplyDeleteEczema Cape Town
L'Association Française de l'Eczéma (can't remember if you had this one or not)
Eczema Association of Australasia Inc
Singapore Support Group with Mei of Eczema Blues http://eczemablues.com/category/support-group/
BTW checked out Eczema Cape Town. I like them but they are not on a par with the other patient associations. Too small at the moment. I will keep an eye on them. Am following on Twitter.
DeleteWhat a great idea ! :) I have been fighting my 1 year old daughters eczema since she was 4 months old - and it has been a real nightmare finding things that help. Like you - I decided to start mapping, so that other people like me don't have to work so hard to find things that work - and started collating all of the products and services that I have found along the way on a website. Would love it if you could support in some way, either by adding products, reviewing products (or just giving us a shout out) :)
ReplyDeleteMy email is info@alleryhub.co.uk - would love to hear from you X
Leyla
Jennifer, thanks so much for your input. I knew you would have some good suggestions. I'll add them.
ReplyDeleteHad you heard of "EASE"? http://www.eczemacanada.ca/en At first I thought they were, essentially, the Eczema Society of Canada. But they are not. They are funded by pharma co Astellas, not that that is necessarily a bad thing.
Leyla, thanks for letting me know about your project http://allergyhub.co.uk/ . Looks like you have a lot of information.
ReplyDeleteI will email you. Product reviews--well, my policy is to write exactly what I think about products that are sent to me. I do not write PR pieces on this blog--I need to be able to look leading scientists in the eye and have them take me seriously. As long as that is understood, I'm up for checking things out.
Spanish Key, that is exactly what makes you the perfect reviewer in my eyes - so yes, email me! :) X
ReplyDelete