muffin pants (![[info]](http://l-stat.livejournal.com/img/userinfo.gif){kind=small} scarydan) wrote,@ 2009-01-06 21:32:00 |
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This is a re-post of information from my friend Karolyn.
"In 2003 I was diagnosed with Ehlers-Danlos Syndrome, which involved a very scary lecture on my prognosis and little else in the way of medical advice. Very little information was available and finding others who had this (let alone doctors who would be able to effectively treat me) was an impossibility. In the years since, EDS has raised its profile in the medical community a bit but still remains relegated to outdated information and stereotypes that lead to misdiagnosis. The disease is estimated to affect 1 in 5000 people, yet only 10% of those are diagnosed in their lifetimes. It's maddening, to say the least.
For the past year I've been working hard to establish local treatment centers, connect patients in the tri-state area and educate both doctors and patients on how to handle each other effectively. It's an uphill battle and I'd be lying if I said I was optimistic about its long-term effect. Still, this is what I devote most of my energy to these days and I'm proud of that effort.
One of our persistent issues is obtaining accurate media coverage. There have been a handful of features over the years which showcase the disease as something that manifests itself visually and perpetuate the stereotype that we're all circus freaks who look vastly different from the general population. SOOOOOOOO not the case. This type of coverage often makes it considerably more difficult to get diagnosed and/or treated. Thankfully, this is altogether different. This is one of the first shows I've seen that gives a good depiction of the diagnosis process for many EDS Patients. Lynn Sanders, the woman featured in the video, is a powerhouse as far as EDS advocacy goes and I'm quite thrilled this is out there.
Medical Mystery Diagnosis: Ehlers-Danlos Syndrome - http://www.veoh.com/videos/v17122513nK5
Short excerpt: http://www.youtube.com/watch?v=m9rx2n9z
I would really love it if you could watch/tell a co-worker to watch/talk about it to anybody/pass the link around/ANYTHING. It needs a more prominent place on peoples' radars if we're ever going to make any headway in treatment."
It's not quite on the same scale as the digestive issues my mother has had, but the popular reaction is the same - misdiagnosis, disbelief, derogatory attitudes in restaurants. There's a lot of medical shit out that that we don't know about, and so many doctors willing to just fob everything off with antibiotics. There's pretty much no EDS support in Sydney that I've noticed. I don't know a lot about EDS other than what Karolyn's told me or what I've read, but it can be pretty debilitating, and incredibly varied as well - good days and horrendous days.
If you can pass this on - even just the doco link rather than Karolyn's blurb - that would be great. If you read it, thanks for reading.
"In 2003 I was diagnosed with Ehlers-Danlos Syndrome, which involved a very scary lecture on my prognosis and little else in the way of medical advice. Very little information was available and finding others who had this (let alone doctors who would be able to effectively treat me) was an impossibility. In the years since, EDS has raised its profile in the medical community a bit but still remains relegated to outdated information and stereotypes that lead to misdiagnosis. The disease is estimated to affect 1 in 5000 people, yet only 10% of those are diagnosed in their lifetimes. It's maddening, to say the least.
For the past year I've been working hard to establish local treatment centers, connect patients in the tri-state area and educate both doctors and patients on how to handle each other effectively. It's an uphill battle and I'd be lying if I said I was optimistic about its long-term effect. Still, this is what I devote most of my energy to these days and I'm proud of that effort.
One of our persistent issues is obtaining accurate media coverage. There have been a handful of features over the years which showcase the disease as something that manifests itself visually and perpetuate the stereotype that we're all circus freaks who look vastly different from the general population. SOOOOOOOO not the case. This type of coverage often makes it considerably more difficult to get diagnosed and/or treated. Thankfully, this is altogether different. This is one of the first shows I've seen that gives a good depiction of the diagnosis process for many EDS Patients. Lynn Sanders, the woman featured in the video, is a powerhouse as far as EDS advocacy goes and I'm quite thrilled this is out there.
Medical Mystery Diagnosis: Ehlers-Danlos Syndrome - http://www.veoh.com/videos/v17122513nK5
Short excerpt: http://www.youtube.com/watch?v=m9rx2n9z
I would really love it if you could watch/tell a co-worker to watch/talk about it to anybody/pass the link around/ANYTHING. It needs a more prominent place on peoples' radars if we're ever going to make any headway in treatment."
It's not quite on the same scale as the digestive issues my mother has had, but the popular reaction is the same - misdiagnosis, disbelief, derogatory attitudes in restaurants. There's a lot of medical shit out that that we don't know about, and so many doctors willing to just fob everything off with antibiotics. There's pretty much no EDS support in Sydney that I've noticed. I don't know a lot about EDS other than what Karolyn's told me or what I've read, but it can be pretty debilitating, and incredibly varied as well - good days and horrendous days.
If you can pass this on - even just the doco link rather than Karolyn's blurb - that would be great. If you read it, thanks for reading.
