Lauren Chapman suffers from the rare disease erythromelalgia. Her immune system cannot regulate her body temperature, leading to pain and swelling throughout her body in almost everything she does. It feels like she is burning all of the time. And the disease is getting worse as she gets older.
Read how she has 'overcome' her condition and now continues to play professional hockey in USA.
Read more: http://www.lenconnect.com/article/20150125/Sports/150129329#ixzz3PxdxLAZM
I think she is a very strong young lady and I do admire her (saw her video a few months ago). But I find this headline here *young lady overcomes EM* quite misleading - to use the word *overcome* sounds like she found a way to deal with it to where she doesn't have flares or painful episodes anymore.
Typical MEDIA - Write about something they know NOTHING about .... Totally misleading as usual.
Cheers -
frostbite.
Hi my friends,
Yes, the same could be said about Dr Cohen's report of being flare free "Erythromelalgia, with its burning, red hands and/or feet, is a painful, limiting condition, but treatment can be effective in many cases. I know because I developed EM in 1995, when little was known and the few known treatments did not work. I was bedridden for 3 years and limited for many more until, by trial and error, I found therapies that work for me. My condition today is 95% controlled, and I have little difficulty unless the temperature rises above 85 degrees. I am highly active without pain" http://www.medicationsense.com/articles/2012/emtreatment.php
I find the Lauren Chapman article positive , albeit I agree its use of 'overcome; could be misconstrued . It is inspirational in the sense that some of us , like Lauren, may be lucky enough to be able to better manage and cope with symptoms ie: its not all doom and gloom. I say that guys being , as you know, totally disabled and bedridden with the damn thing and it sure does feel like doom, gloom and more doom a lot of the time . Overcome for me = no longer rendered helpless, hopeless, not letting EM make us into victims!
Frostbite is right MEDIA stinks, but the crux of this article is that Lauren has found a way to better manage HER symptoms and despite being in pain she remains hopeful :). Thats no way saying that you or I should or could better manage ours, nor is it saying that our EM is anyway comparable . We all know that EM is a highly variable, individualised syndrome. No one medication regime suits everyone , nor do we respond similarly.We all adopt particular minimisation tactics, cooling methods and make lifestyle changes specific to our symptomology and our own lives. We dont know where Lauren was on the pain spectrum or her exact symptomology, but the message conveyed surely can be deemed uplifting. I personally know a couple of EM'ers who are now 'highly active without pain' and several who have stabilised and regained some quality of life . Only 3 years ago little was out there in public domain, now we have Xenon, Pfizer, Astrazeneca and several other smaller research studies showing an interest in erythromelalgia .I truly believe that we are moving a step closer daily to that elusive cure. Seeing anything about EM good/bad is hopeful if it gets people talking and raising awareness.
God bless x
I have added her other articles so we can all get a better sense of her journey.
http://highschoolsports.mlive.com/news/article/-558853473155189998/...
i found the same thing. when i am playing soccer sometimes i can forget about the pain for a while. as long as i can keep my mind distracted.
I do so agree with you Martin. I’ve always believed in mind over matter and distraction therapy. One of my children had painful joints from a very young age but if there was a party to go to no-one would have believed that she had a problem. Obviously you can’t overcome everything but taking the mind to another place seems to work for me.
I didn't read the article but my belief is that when something like that is reported they should list a source of where they got that kind of information from. I don't believe it's true, haven't heard that anywhere.