Outrageous: "The Doctors" Mistreatment of Hypermobility/EDS

I received this message from a friend today; I hope you share her outrage at the way Hypermobility was misrepresented on this show and let them know about it.

Here's the message:

"Can you forward this to the appropriate people at EDNF?

I think it is very important that our community respond to this segment on the TV show "The Doctors" that aired today.

It featured contortionists and asked the audience to try the Beighton test to see if they are hypermobile.
Here's a quote from "The Doctors" website:

"Assistant director of performance medicine for Cirque du Soleil, Kerry Gordon, explains how contortionists attain their amazing flexibility and strength. Could you be a contortionist?"


Please view the video at:

http://www.thedoctorstv.com/videolib/init/5202


I am outraged at how they addressed, or rather - did NOT address the medical issues and problems associated with hypermobility. The medical staffer who works with hypermobile performers talks about the Beighton test like it was a novelty and "just for fun"? To top it off, the host (Dr. Travis) summed up the segment with his "take home message"... people should test their flexibility to see if they could have a career as a contortionist... as if they're LUCKY if they pass the test! Yet there was no information to inform people the reasons WHY they might be hypermobile or potential medical problems associated with it!

I understand that this particular TV show is somewhat superficial and mass marketed, but it should be giving accurate information. This could have been an opportunity to HELP people and make them aware that this could be the REASON they are in PAIN! At minimum, they could have given people a warning on WHY they should NOT overstretch if they have hypermobile joints!

Lets join together & flood their message boards with REAL information!"

OK everyone, let them know what living with EDS Hypermobility is really like:

http://www.thedoctorstv.com/main/home_page

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71 replies. Join the discussion

I just sent my opinions to the so called "doctors"...how could they be so ignorant?

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NO S*** Did you get to see it? I am hoping more people flood there darned web site :)

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I just did my part and laid it out under "glueme". Really ticks me off!

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Just another note....lets get this on facebook website and get some more attention to this. I just watched the video again and the "test" they demonstrate, just .... ooohhh .... so angry!

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Trying to get the video to load, but this show has a history of exploiting the hypermobile. They had a young man on several months ago who was CLEARLY hypermobile and they made assanine comments about it. The most common sense comment from any of them was "you shouldn't do that because it will put wear and tear on your shoulder" and they showed how he was dislocating his shoulder every time he did it. The young man could turn each hand around twice though! The other docs were saying "cool!" "wow!" All comments that were posted trying to inform the producers about EDS were of course deleted and the video was soon taken down from their site. I assume the same will happen here, but of course we should continue to TRY to educate them. They have a platform to do good and they continue to ignore it.

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Very frustrating to witness that. The physicians had the perfect oppourtunity to educate the audience and the world but chose to make it look like a blessing instead. I too voiced my opinion with them. Also, put on facebook then explained how irresponsible the physicians were in not informing the public of what a body like that and a Beighton score could actually mean for a person.

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When I first started to read this post, I thought it was the same one as before! I read the one about the hypermoibile young man on "The Doctors," and I find it appalling that they continue to exploit us!! This is horrible and needs to be addressed! I am going to comment on the video too, and I am happy that so many people want to bring this to the show's attention too!! Hopefully they don't delete the comments like last time!

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http://www.ednf.org/index.php?option=com_content&task=view&id=2159

To the Producers and especially the Doctors that host "The Doctors":

The Cirque du Soleil performers were very graceful and elegant and demonstrate how wonderful the human body can be. Like many performers, they began training at a young age and continue throughout their lives to achieve and maintain peak performance. Contortionists almost uniformly have generalized ligamentous laxity and their training not only keeps them "loose" but they learn to control their bodies in all of their movements. However, many with generalized ligamentous laxity have an underlying connective tissue disorder that is often fraught with joint subluxations/dislocations, injuries such as strains and tears, poor healing, and acute and chronic pain and these are just the musculoskeletal issues.

One of the more common conditions with generalized joint laxity is the Ehlers-Danlos syndrome. Many who present to their doctor with complaints of pain or that their joints move too much or a parent concerned about the clumsy/awkward child, may all be found to have joint hypermobility. Doctors don't often examine for this trait and when brought up by the patient, it is too often dismissed as "there is nothing wrong with you" or "you could be a circus performer".

The patients and their families that we represent as health professionals and as the Ehlers-Danlos National Foundation are understandably upset and even betrayed that "The Doctors" would display such a characteristic as one-sided that being "you could be a contortionist too" without understanding that many live in pain from their joint hypermobility. You must also realize from the impact of your show, "The Doctors" is seen as a credible program about health and disease and this segment only reinforced the misconception that joint laxity is a benign or even desired talent by anyone.

We ask that you consider such things in the future and more importantly to our population, we ask that "our side of the story" be also told. We would be happy to recommend patients and professionals alike for your consideration in such a segment.

Brad T. Tinkle, MD, PhD
On behalf of the Board of Directors and the members of the Ehlers-Danlos National Foundation as well as those affected with EDS everywhere

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Amen.

When I was first diagnosed, the Professor asked if I would be a case study for a group of medical students. This was before I was told the diagnosis myself. I agreed. Not one of the students' made the correct diagnosis. Instead of being humbled or learning from their mistake they then trivialised my pain. 'Party tricks' etc. I was so furious. I had pain in my shoulders, elbows, wrists, hips and knees and the Registrar that examined me heard distinct 'clicks' and grinding in my hips. I was furious, and it was all I could do not to abuse the students. What sort of arseholes find another human being's extensive and debilitating pain amusing? As far as I'm concerned a threat of malpractice is the least these sort of doctors deserve. It takes that to penetrate their arrogant ignorance. I advocate that EDSers use this threat when they encounter this sort of doctor. The one time I did it the result was a marked change in attitude.

It has been estimated that the pain and debilitation experienced by EDSers is often on the same level as people with rheumatoid arthritis. In fact in doing a pain rating for rheumatoid arthritis, the level of pain I had, meant I should have been in a wheelchair, yet I did not have any sign of crippling. This discrepancy is what led me to question the diagnosis and repeat lab tests done by other laboratories on myself. I had full access to a pathology laboratory at the time. Would these students have treated someone with rheumatoid arthritis this way? I hope not.

The Professor himself was always courteous and respectful, though I wish he had taken these students to task in front of me.
He later revealed he himself had EDSIII and still easily dislocated his shoulder at least once a week. I'm sure he meant well in attempting to educate the students. I really wished I had taken them on, but I was too well brought up I guess, as well as being anxious to question the Professor.

So my advice, carry your lawyer friends card and a big stick and use them both to be treated with respect by doctors such as this.

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Awws looks like their server is busted it's not allowing new member activations boo. Maybe the server passed the circus test and decided to go join.

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See it wouldn't be so bad if they hadn't showed a test for EDS and turned around and said hey you might get a job at a circus just a minute on what else it could mean might actually have found people that had it and didn't know. Now they think I'm more then okay I'm going to have a straight spin wooo for a second there I thought I had something wrong with me.

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It may not be the server. It will not let you copy and paste or autofill. That was the problem I had when I first tried. Just a thought.

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I agree, I wrote a letter to the show. But I'm having a rare good day, no pain or headache. As House put it 'the bitch is back'.
So I thought what the heck, darn it, the best thing to do about this situation is to get as much adverse publicity of it as possible.
Forget writing to the show. It is time we got serious and put an end to all this nonsense. I've put up with it and been polite for over 30 years now. To be honest I'm tired of it. Let's write to the OPPOSITION TV stations, current affairs programs, email newspapers, refer all the above media to this site. Give them a lot of ADVERSE publicity. If this is not enough we could get hire a lawyer/law firm, start a class action, join forces with other online forums. Demand an on air apology and correction, a proper coverage of the topic AND sue them. Given the amount of evidence readily available on EDS I think we have a damn good case. I'm tired of being treated like a freak, not a human being, and having severe and painful medical problems trivialised and untreated.

Please feel free to edit this post for legal or other reasons. I have posted the letter intended for 'The Doctors' show below. If it helps use it. I may not be able to post further today as pain has set in now.

"When are you going to get people with rheumatoid arthritis or osteogenesis imperfecta on the show and find them amusing, test them and propose it is a bonus to have these disorders as you did with Ehlers Danlos? Perhaps they would like to join Cirque de Soleil?

Do you find class actions amusing also? What about an unreserved and genuine apology on the show and showing the problems people with Ehlers Danlos face, including ignorant and arrogant doctors comments on this disorder that perpetuates the myth that it is an entirely benign disorder? Beighton used the term 'Benign' in the context of comparing Type III EDS with other connective tissue disorders such as Marfan's Syndrome or Osteogenesis Imperfecta, or the vascular form, not people without a connective tissue disorder. If you know about Beighton's tests you should have known this also. He stated that the Russian ballet used to test for hypermobility to EXCLUDE overly mobile dancers as they would have difficulties with the en pointe stance, due joint instability. He also pointed out that ignorant doctors caused people with Ehlers-Danlos so much distress that they suffered from iatrogenic depression. He stated they were NOT depressed before, but it was the doctors treatment of
them that caused the problem. And they still do DECADES later and in spite of greater medical knowledge of this syndrome.

You want to know what I've done to help myself?

Studied scientific and medical journals, taken these to arrogantly ignorant PCP's who ignore or are hostile to specialists advice, visited rheumatologists, neurologists, ENT specialists for allergies, tonsillectomy and adenoidectomy due to septicaemia
and glomerulonephritis,[well actually my parents did that as I was only 2yrs old] correction for septal deviation due to EDS III, ossicular reconstruction to correct EDS III related otosclerosis, orthopaedic specialists for broken bones and tendon transplant surgery which was misdiagnosed for two years, allergists, cardiologist for MVP and aortic assessments, gastroenterologists, gynaecologists for severe dysmenorrhoea including fainting from the pain, menstrual migraine, dysparunia due to EDSIII, extensive orthodontic work as a child that lasted 7 years and included many extractions, braces, surgery under local and inadequate anaesthesia, [before EDSIII diagnosis] to correct problem of crowding due to EDS III. Visits to ophthalmologists for myopia and blurry vision, involuntary eye closure, and familial glaucoma which may also be EDS III related, occupational therapists for workplace adjustments and home setup, radiologists for bone density measurements, physiotherapists - for pain relief using massage, ultrasound, exercises to build muscle strength, TENS, anti-inflammatory or pain relief creams, infrared heat, water therapy, exercises for migraines due to cervical instability, rehabilitation following surgery or fractures, assorted painkillers and anti-inflammatories, nasal sprays and drugs for multiple allergies, Neti pot, removing known allergens and triggers where possible,[this is so much fun when housework causes you a lot of joint and muscle pain and fatigue], medications for migraine, Vitamin D for lab diagnosed deficiency and BMD diagnosed ostepenia, occupational therapists for workplace adjustments, advice on ergonomic equipment and safe workplace training, assistive technology, home setup changes, learning to type in part because writing is too painful. Finally ,treatment for dysautonomia and POTS due to EDSIII. Some people have also suffered broken bones, others have drowned, or sustained head injuries because they picked a bad place to faint. There is often no warning. As well some collapse as a result of mitral valve prolapse, or ruptured aortas, and suffer further injuries or die.

Many tests to EXCLUDE other diagnosis such as rheumatoid arthritis, celiac disease, fibromyalgia, bowel cancer, lead and mercury poisoning. Even having tests such as colonoscopy or Pap smear is a nightmare. I kept waking up during the colonoscopy and it had to be discontinued. I found out later that people with EDS III type have abnormal reactions to anaesthesia. Sometimes it doesn't work at all or is delayed. Pap smears and exams result in cervical bleeding.

Not surprisingly in having to deal with these very real problems and the attitudes of ignorant primary care givers they have to access first, in order to see appropriate specialists, a lot end up then seeking treatment for iatrogenic anxiety and depression with psychiatrists. Some don't as they fear they will be written off again as hysterical, hypochondriacal, malingering, fraudsters, drug addicts etc. Others may seek psychiatric help because they have had their children taken by Child Services and been unjustly accused of child abuse as their children have bruising and broken bones and other injuries. Or if they have gone from doctor to doctor seeking help for their children in terms of a diagnosis or because they have multiple health issues due to a connective tissue disorder and surgeries, they are accused of having Munchausens by proxy, and arrested and their children taken. They then have to engage in legal action and pay lawyers to defend themselves against a situation where they are genuinely victims and wind up with lawyers bills on top of medical bills to pay. As well at least one parent must also have this disorder themselves, as it is inherited in a dominant fashion, not recessively.

Some have to go on disability and encounter all the problems mentioned above because of Social Services ignorance of the disorder, on top of the problems getting medical assistance in the first place outlined in the previous paragraph, poverty due to
unemployment and medical bills.

Compared to some with Ehlers Danlos, I am one of the healthier ones. As well many have to cope with day to day responsibilties of children with the disorder, like themselves and premature deliveries, miscarriages, dysparunia, and a labor and delivery lasting 20 minutes without anaesthesia as medical help hasn't arrived. Some suffer various forms of abuse from partners, family or even neighbours because they may look ok, while really being quite ill with migraines, pain, fatigue etc. or simply because these people have a problem themselves and see people with EDS as an easy target. Some become reclusive because of the way they have been treated.

Still find the situation so amusing? Render a sobre and sincere apology and adequately cover the problems people with Ehlers Danlos syndrome face on your show, or be litigated out of existence by a class action of people with this disorder. We all have copies of the show and most have multitudinous medical evidence of their health issues. We tend to hold on to medical evidence in case we need to convince doctors such as yourselves, as well as to assist in diagnosis or for comparison purposes. Some canny ones also do it for legal reasons or to assist with gaining disability support.

Don't you just love patient forums? I use them for a variety of reasons. By the way, a lot of people on these forums these days are well educated and middle class and work together, many are medical doctors, medical scientists and researchers recruiting for clinical trials, rheumatologists, lawyers, dentists, ophthalmologists, some with EDS themselves. Their partners are often middle class, educated and able to afford lawyers as well. Though to be honest many lawyers will take on this very 'slam dunk' case in return for payment on settlement. Don't underestimate our intelligence either. It fortunately is unaffected by EDSIII, and though we may have neurological issues, some like myself have overcome these and our partners and children may not have them.

You obviously believed you could provide entertainment for your audience at the expense of people with serious medical problems. This makes it hard not to question your integrity or medical knowledge, let alone any compassion as doctors or human beings.

So do you find the words 'medical malpractice' and 'deliberate infliction of pain and suffering' 'loss of income or benefits' 'out of court settlement' amusing? We could be talking billions here. EDS III has been claimed by one rheumatologist - Dr Bravo, to be the most common rheumatological condition, making your lack of knowledge even more abysmal. The problem is primary care doctors don't even recognise it as a problem, that is if they diagnose it at all. However, with the adverse publicity caused by this case, more people will recognise the problem they have, seeking medical treatment may get easier, and and they may join the
class action. As well, your show is syndicated to countries outside the USA. Internet usage is becoming commonplace even in less developed countries.

But look on the bright side. If you are broke and lose your license, and have no means to earn an income, perhaps end up on disability, with legal bills, you can try being tested for Cirque de Soleil.

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If it isn't busted, perhaps we could organise something perhaps? I have a lot of friends in IT.

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As in Distributed Denial of Service perhaps?

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Precisely why I suggested an alternative plan in a later post.

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Had to add this afterthought. We should ask them to show each offensive episode, and apologise on air for each and every one of them.

Don't continue being a victim being used by people such as this. Let's do something that will make them wish they had never thought of belittling us on national television.

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I am equally outraged. I was going to suggest that we have one of the medical experts respond to the show. I'm glad to see that Dr. Brad Tinkle has done that. Perhaps, if the other doctors don't have time to write a lengthy response, they can sign their support to Dr. Tinkle's letter or sign a separate petition created for this purpose?
Also, what about having Lara (I think that was her name) from the UK that did the marathon to raise awareness of EDS, and was being filmed for the BBS? Could we advocate for her to appear on The Doctors and be supported by some of the EDS specialists? I'm thinking from the perspective of "The Doctors" directors and writers - they want to provide tv that is engaging and entertaining - perhaps offering them a story like Lara's that is so inspiring and touching would interest them more than thinking that we just want to show a bunch of people in pain and misery that they think "will just bring viewers down". They'll want real stories of motivation and how some have dealt with the medical issues, but still had full, inspiring lives. I don't mean we downplay the reality of those whose lives have been filled with severe and debilitating issues from EDS, but I think we need to provide some optimism and hope - that is what viewers want - and that is what other possibly undiagnosed EDSers will need to see as well.

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I wrote in while show was airing. How fun it is to dislocate and reduce it yourself (especially that first time) Hips hurt. I also mentioned many surgeries at Cleveland Clinic and Columbus 5+ in the past year. I do know I went into more detail but someone was asking if anyone from the medical community sent anything in; I was writing in while the Cirque people were still on the floor after that lady made her comment. And last but not least I did be sure to sign it.......

Dana Casper, RPh, Certified Immunizer

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Excellent suggestion 1flexymomma!! I agree that that they (the show) needs "real" people and stories so to be relateable.

Has anyone seen anything so far as a response to Dr. Tinkle's letter from them?

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