The Ehlers-Danlos Syndrome (EDS) community has been waiting since January 25, 2007 for the producers, Siobhan Nolan & Kate Harrington to response to their pleas. I hope the both you enjoyed the EDS Today newsletter that we sent. So, that you could see what "REAL FACES OF EDS" look like.
For those reading this for the first time, this is what happened:
The seriousness and life threatening symptoms associated with EDS was downplayed and excluded from this program. Their horrific presentation of EDS was truly devastating for those affected and their families. The ignorance continues, with ABC's portrayal of EDS in this way. The enormous harm that was caused among our children, teenagers, young adults, and all those who suffer from this disorder. Making those who suffer with this disorder feel like they are nothing more than "FREAKS in a CIRCUS" side show.
ABC Primetime "Medical Mysteries" producers were well aware (months before the segment ever aired) of every type of Ehlers-Danlos Syndrome (EDS), (had all the written material on EDS as well) and even the fact that there has been a long history of the "Circus Freak Stereotyping" associated with EDS, which has caused enormous harm to those suffering with EDS. Especially among those in the medical community, many think that EDS isn't a serious, legitimate disorder, and it's often misdiagnosed because of this kind of presentation of the "circus freak" with extremely stretchy skin. They chose to disregard these true facts.
I personally spoke with the producer, Siobhan Nolan and told her all of this. I also told her what happened to my son and the way that I was told my son had EDS:
"My pediatrician called me at the Children's Hospital ICU (where David was there fighting for his life) that's when he told me; "That they think Dave has Ehlers-Danlos Syndrome". I said; "WHAT!!! What the hell is that?" his words to me were; "It's what the circus people have!" "What!!!!! I said". He then proceeded to tell me, "Where they can bend in a pretzel"... I told him my son can't bend in a pretzel!!!" What are you talking about???... Just then, an overwhelming feeling flooded my being - Oh! my God, "They're looking at my son as if he is a circus freak".
My 14 year old son died a horrible death because he wasn't diagnosed. It was only 3 days before that I had heard the words Ehlers-Danlos Syndrome Vascular Type (IV). He received inappropriate medical care/treatment for those with this disorder.
Ms. Nolan asked me what I thought was the most important things about EDS, that the show should focus on. I told her that I hoped that she would show the true magnitude of this disorder. Explain that EDS is a legitimate medical disorder, that is often misdiagnosed - that the correct diagnostic criteria for diagnosing each type should be addressed. That separate underlying medical problems (associated medical condition) can occur with EDS. That it's poorly understood and often under-recognized outside the realm of the Medical Geneticist. That it can be a painful, life threatening disorder.
ABC exploited the "Circus Freak" performance of someone who had an extreme case of this disorder (Garry Turner and the Circus of Horrors performers (who do NOT have EDS) and who happened to choose to be a performer in this kind of circus. This kind of show that was portrayed in no way represents those that suffer with this disorder, and die from it every single day.
The ABC message boards on Primetime's website were filled with the backlash of comments from angry sufferers on how this presentation has negatively affected them and the EDS community. They mislead many people and even Dr. McDonnell from NIH (National Institute of Health) whom they spoke with months prior to this show airing. All this injustice was done to sensationalize our genetic disorder for profit and ratings.
ABC has done shows on other genetic disorders, like the Hypertrichosis (wolf-man; werewolf), Primordial Dwarfs (worlds smallest people), Ectrodactyly (Lobster Claw Hands), and even a morbidly obese man (The Fat Man). All of these disorders and many others have had a long history of the "Circus (freaks) side shows", because of their physical differences. ABC didn't choose to show these disorders with someone performing in the circus. They only chose to exhibit our genetic disorder with a circus performer in the "Circus of Horrors" not present it in a respectful, creditable, accurate way . Why would they do it to us?
ABC was nothing more than a #### copy of "Ripley's Believe it or NOT" .
Watching this show just brought me to tears... I cried for my son, and all the people who also suffered horrifically (because of this ignorance) and died, many not even diagnosed. It brought my grief right back to the surface. All I felt was that overwhelming anguish of being told that my child has "What the circus people have" while he's laying there fighting for his life... Can you imagine what that feels like?
I still can't believe those words were ever said to me by this doctor. I think this is the first time in 10 years, that I truly would wish that my son didn't have Vascular EDS...that he died from something else. Some other disease or disorder that has some respect, value, and acceptance.. not one that feels so belittling, insulting, a stagma of this "circus freak side show ignorance, like my son was nothing more than a freakish oddity -inhuman! This really makes me sick to my stomach and breaks my heart..once again!
On ABC’s website they have posted at least 10 pictures of this outrages circus of horrors and the performers, (Garry was in 3 pictures) none of others suffer from this disorder - so why would they post these under the heading "stretchy skin" for all the public to see pictures of Ehlers-Danlos only to see the "Circus of Horrors".