Saturday, January 27, 2007


Circus Performer is Real Life Elasti-boy

Yep, that's the headline that has accompanied the ABC press release as it has appeared in newspapers across America. And ABC is shocked, shocked, I tell you, that we're pissed? The attitude that people with EDS are some sort of freaks interferes with proper diagnosis and early, useful, intervention. This is the sort of attitude that creates situations like I wrote about in FLK.

All in your head?

Erica has an interesting graphic from the EDNF.

Friday, January 26, 2007

Mobilizing against misrepresentation

The American Pain Foundation is spearheading a campaign to let ABC know that its representation of EDS on Medical Mysteries was irresponsible and injurious. APF has set up an action alert to send letters to ABC about their treatment of EDS as a freak show. It's easy and you will feel much better letting ABC know their treatment of disability issues leaves a lot to be desired.

While you're there, you might want to join APF. It's free! And they are an effective lobbying group. Free and effective! What could be better?

And, as someone else has suggested:

Remind everyone that this is a great opportunity for us to be contacting television, print, and radio media right now. Write those letters to the editors of your local paper! Let them know that the nature of the show is indicative of a desperate need for public education and awareness.

It is also the ideal time to be contacting your state and federal legislators (especially those on health and education committees) as they may have seen or heard about the segment. Let them know that this poor coverage is further evidence that additional research and education requirements are needed.

Research indicates that EDS affects one in 5,000 people. Current statistics indicate that there are just over 300,000,000 million people in the USA so, 60,000+ must have EDS. Assuming each of them has an average of 8 friends, family and caregivers, there are nearly 500,000 people who deal with EDS on a daily basis whether they realize it or not.

Keep in mind that we do have talking points that should be common in our correspondence. These talking points should be illustrated in our personal stories.

Tip #1: Keep the message simple, to the point and concise. It is a KISS=Keep It Simple & Short.

Tip#2: Know the talking points:

1. Ehlers-Danlos Syndrome is a genetic condition that can cause disfigurement, crippling disability and early death if not diagnosed early and its symptoms managed.

2. More research is needed to facilitate early diagnosis and to develop effective treatments that will prevent death, disability and disfigurement.

3. EDS research overlaps with other segments of the population; aging, arthritis, healing (diabetes), pain and cardiovascular health.

4. The diverse EDS community is full of compelling stories; athletes, dancers, musicians, children, doctors, nurses, singers, bankers, accountants, lawyers, parents, soldiers, pilots, grandparents, friends.....

5. Published research indicates that EDS affects one in 5,000 people. Current statistics indicate that there are just over 300,000,000 million people in the USA so, 60,000+ must have EDS.

6. It is estimated that only 10% of EDS affected individuals receive a diagnosis prior to an emergency situation that results in disfigurement, a crippling disability or premature death.

Spread the word. And write those letters! If you know of another disability that has been misrepresented in a particular episode of Medical Mysteries, why not mention that, too? Mobilize against the side show!

Wednesday, January 24, 2007

Medical Mysteries

The EDS lists are abuzz over ABC's Primetime show "Medical Mysteries." And not happy abuzz, either.

And ABC is sure hearing about it! Bunches of angry people, not at all pleased at the implication that they or their children are freaks, have descended on the Primetime message board.

If you really want to know what EDS is about, check out EDS Today or CEDA or EDNF.

Amongst EDSers, the number one rule is: No party tricks. So, no. Don't ask us. We aren't turning our feet backwards or yanking on our skin for your amusement.

Wednesday, January 17, 2007

Victim of inclement weather

At the beginning of this week, we had unusually icy weather. So unusual has been this weather event that just about everything was closed down from Sunday through Wednesday. This includes my employer.

I appreciated not having to drive on iced-over roads, but staying at home has its own particular dangers. Since my house is both uninsulated and unheated (it also has a tiny bathroom that seems once used to be the pantry, so we're talking Old House), most of the past few days have been spent in one room, with one space heater and my electric blanket. And of course, I spent lots and lots and lots of time with my laptop, surfing to every link of any interest whatsoever. Since I live alone, there was very little to distract me from this dangerous activity.

Thus my ice-related injury is that I have generated a cycle of subluxing in my wrist. And this is on my dominant hand, so avoiding stress on it is not likely.

But that wasn't the end of it. Friday, I was back to teaching. After my classes were over, I got in the car. I started it up. I backed out. I put my foot on the brake. And dislocated my knee.

On the bright side, it was still cold enough that ambient air temperature all on its own kept the tissues from swelling. And, the other bright side, that particular knee has dislocated so often that at this point it reduces itself as soon as I take pressure off it.

On the not bright side, it's my right knee that will now need to be gingered for the next month or so, and my left wrist that is in a sublux cycle. So I guess I'll be using my cane like Dr. House. I hope that doesn't put my right shoulder out of commission.

Friday, January 12, 2007

Ashley X and designer disabilities

Wow, here's a case where the parents have actually designed some "disabilities"! The parents claim the "Ashley treatment" will enable their daughter to participate more adequately in their family life and society. What would the defenders of the Ashley treatment think of hypothetical Deaf parents who deafened a hearing child in order to remove the distraction of sound and make it easier for the child to fit into Deaf culture? I know of no such instance--the example is completely hypothetical--but I have a feeling that there would be no hospital board of ethics that would approve.

Then there is the other side of things. How do we know that Ashley doesn't approve of her treatment? There are people who remove perfectly good bits of themselves, like legs and penises, just because they feel uncomfortable having them. Are Ashley's parents right? Would she have been uncomfortable with breasts and a uterus to such an extent that she would have wanted them removed? Just because Ashley has a pre-existing disability doesn't mean that she might not want to design her body a different way. And what if a precocious, articulate Ashley had been able to somehow request it? Again, I have a feeling that no hospital board of ethics would approve. Heck, I know of people who have had dysfunctional uteruses who went from doctor to doctor for years before getting the bleeding, painful, prolapsed disaster taken out as they wished. Maybe they should have had their parents make the request.

(For some background on "designer disabilities," follow the link from this post.)

I decided I should add a bit, just in case anyone is confused about my opinion. In the current social environment of the United States, the right of people with disabilities to control their own bodies and to make decisions regarding their children is met with horror and distaste. Yet, as we see with the Ashley treatment, the ability of able-bodied parents/caretakers to make radical medical decisions based on conjecture over future events rather than the actual needs of the person in their care is hailed as necessary and a kindness. This attitude trickles down to the littlest thing. I was at the hospital this week with my own grown daughter, who needed to return a monitor for a reading. When she fell due to a combination of seizure and EDS, nurses asked me what I wanted to do. Hell, don't ask me. Ask her. It was a short seizure. She was conscious. She's an adult. I don't own her.

Monday, January 08, 2007

Stephen spaaaace!

According to the Telegraph, Prof. Stephen Hawking is going to go where no gimp has gone before. That is, assuming Richard Branson gets his space tourism rocket up and running by 2009. But even before that, Hawking intends to fly the "vomit comet" this year. I guess that is a necessary step toward seeing if he can handle zero gravity. I am all excited! I hope it all goes well for him.

Oh, and today is Hawking's birthday! Happy 65th year, Prof. Hawking! Keep on rolling!

Thursday, January 04, 2007

Subway Hero

I suppose everyone has heard the story of Wesley Autrey's heroic act by now. And I certainly have no intention of arguing that Autrey was anything other than heroic when he rescued Cameron Hollopeter from the oncoming train.


If you ever come across a person having a seizure, you don't stick anything in their mouths. Never, never, never. This is something that my daughter lives in fear of, that some helpful soul will come across her while she is defenseless and stuff a spoon in her mouth. Stuffing a pen in the mouth is equally Not the Right Thing to Do. If you don't believe me, believe the Epilepsy Foundation.

So, what should you do? It's easy, and you don't need to be particularly heroic:

  • Move anything dangerous out of the way.
  • If the person is in a dangerous place, like the middle of the road or the edge of a subway station or face down in a puddle, move the person having the seizure out of the way of harm, just like you would for anyone else you find in a dangerous place.
  • Wait with the person to keep panicky sorts of helpers from stuffing things in their mouth or doing CPR or other inappropriate things.
  • Do not restrain the person having the seizure.

  • Seizures generally don't last more than five minutes or so, but afterwards, the person who had the seizure will likely be tired and maybe a bit fuzzy. Ask them if they would like a chair, a drink, a bite to eat. Ask if they would like you to stay with them for a bit. At this point, they will be able to tell you what they need. Believe them when they say they're OK.

    Now, isn't that easy?