It was really nice to see it on a TV program. When they first diagnosed me no one knew what it was except for the people studying it. Lately more and more people know what it is... and now it was on TV. So maybe some docs will understand a bit more and not have to Google it to know which syndrome it is.
So... other news... tons of stuff I don't want to get into tonight... I'm tired and tired of thinking, ya know? But I will say I had a root canal yesterday. No big deal. Everyone always says how it's the worst thing in the world, but it really really isn't. It certainly wasn't any worse than some of the dental shit I've had done. But a big part of that was probably the dentist. The guy I went to was such a nice guy... he went out of his way to make sure it was as comfortable for me as it could be. All in all... so not a bad thing.
Henry has emailed me a couple of times. Just some bullshit chain letters. "If you don't send this to 15 people in 15 minutes your mother will die a horrible death!!!!!!" You know the kind. I can't quite figure out if he's trying to talk to me again or if he just forgot I was in his address book. Either way I asked him to knock it off.
DJ has called a couple of times but it's usually at a really bad time so I don't answer. *sigh* I need to call him sometime soon. Seriously.
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I don't know whether you are a member of the EDS community at www.ednf.org or not, but I am trying to contact as many EDSers as I can to participate in a letter writing campaign to voice our displeasure with Primetime. See: https://secure2.convio.net/apf/site/Adv
This is a joint call to action between the American Pain Foundation and the EDNF. Please pass this along to all your family and friends and have them write a letter as well.
My EDS Hypermobility type is "mild" as well and I am 54 and only diagnosed 3 years ago. My heart goes out to those who started to be hit with the pain of the disorder at much younger ages or dies from the vascular EDS because noone knew what to look for.
Warmest regards,
hatlady
I was diagnosed when I was about 15 but my health problems started when I was a lot younger. I was in the hospital on and off for several years of my life and EDS was a huge component of that. Thankfully enough the hospital that I was in was John's Hopkins... and they are always on the cutting edge of medical research. My heart also goes out to the many others out there who have EDS, diagnosed or not. Maybe because of ABC doing that story more people will be diagnosed... and what could be better than that?
Personally I'm just glad they dealt with it at all. It's about time EDS got some press, side show freak involved or not.
I'm sure you didn't expect this kind of response, and I'm sorry that it got so long. But I really am curious why you and others are reacting in this way.
I'm 54 years old and my pain and EDS-associated problems (premature bone loss, jaw problems, joint subluxations) started 25 years ago. In hindsight, they should have been able to diagnose me as young as 13. I was just diagnosed with EDS 3 years ago, also at Johns Hopkins (I live in the DC area), after being told for many years before that there was nothing medically wrong with me to cause my diffuse chronic pain and chronic fatigue. I even went through a neuropsychiatric evaluation to appease and prove to one rheumatologist that the pain was not psychological. (Result: no depression, etc.; the shrink concluded I just had pain and needed to address that).
Speaking of Johns Hopkins, six years prior to my EDS diagnosis I was diagnosed with a lupus-like autoimmune disorder by the Johns Hopkins Lupus Clinic (which is part of rheumatology). Well, did they examine me for hypermobility in the work-up? No. Never in my life was I tested by a doctor for how hypermobile or hyperextendable I was until three years ago. I did not even know that I could put my thumb to my wrist before three years ago (I never tried to, so how could I know). Or notice that my knees hyperextended (I didn't know I wasn't within normal range). No one ever pointed it out to me. Do you know how easy it is to spot someone who hyperextends once someone shows you the quick and easy Beighton test? My husband and sons are now spotting people.
Now you would expect that geneticists would be more knowledgeable than generalist physicians about how to test for EDS, right? However, even the first geneticist (who some individuals on the EDNF boards said was knowledgeable about EDS) wasn't sure that I had the skin signs for EDS because my skin wasn't stretchy enough in her view (this was at Georgetown University Hospital). I bruise easily and have the soft velvety skin, but my skin isn't very stretchy. I am 7/9 Beighton scale, but not a candidate for Cirque Du Soleil (I cannot put my leg behind my head). So, if a geneticist doesn't know that it is not required to have stretchy skin for the Hypermobility type of EDS (vs. Classical which has more skin signs), then what do you think most doctors know about EDS? What about the public?
Therefore, the show on ABC Primetime just continues to reinforce the stereotypes and not help open the public or medical professional eyes to what should be obvious. With just five minutes of the clear, concise, and current factual information ... rather five minutes of Garry's dog and his other circus performers ... would have been so much more beneficial. (Note: I have no problem with Garry as a person or with him being a part of the program if used to illustrate the range of EDS.)
I am not making efforts to educate the medical profession and the public for selfish reasons. I am doing this so others do not go undiagnosed for as long as I have. I wish someone had identified EDS in me when I was much younger so I could have taken preventative measures or at least have been able to have my problems taken seriously sooner and pain addressed rather than being humiliated.
It's okay if you don't care about how Primetime handled EDS in their program. You are still young and perhaps as you mature you will see the world through different eyes.
"It's okay if you don't care about how Primetime handled EDS in their program. You are still young and perhaps as you mature you will see the world through different eyes."
That was just insulting and judgemental to the poster, and completely unnecessary. Looking down on people will not get you anywhere in getting them to sign any petitions. And for all you know, what you said, she would have agreed with and conceded to your point.
When it all comes down to it, if doctors are watching TV to learn about EDS, they're pretty stupid doctors in the first place. Anyone knows that most TV shows will not have all of the facts, or all sides of something. If you want loads of facts, turn to the discovery channel, not ABC. I think most doctors realize that as well.
I didn't see the episode, so I'm not going to comment on it directly. I also agree with both of your points, but disagree with how you're handling matters, Hatlady.