I've finally seen the episode now, first over Skype and then again just now on my computer as someone had found a link from UK I think, that works outside of USA. I have to say, that my reaction throughout the entire episode was: WHAT THE ACTUAL FUCKING FUCK!
I did not see someone with Ehlers-Danlos Syndrome in that episode, I did however see a very mentally ill and delusional drug addict who manipulated her entire family to believe all the bullshit. She is Marfanoid as is her younger brother, and apparently has some hypermobility in some joints. But in general, I call bullshit! Until a doctor has confirmed her diagnosis, which no one hasn't yet, she shouldn't walk around claiming to be the face of EDS!
People like her is the reason that us living with Ehlers-Danlos Syndrome and other painful conditions, has a hard time getting the right care and medicines when we seek help, our issues are often labelled psychological even though they're not- in most cases.
I looked very carefully for signs of actual physical pain through the show, I saw none, I just saw a lot of theatrical crap and heard a lot of theatrical screams as if they were recording Scream 2 and not a documentary.
You'll never hear an actual Ehlers-Danlos patient scream like that out of pain! You may just hear some grunts or groans at the most, maybe a rapid ouch as a joint dislocates or is going back into socket as that can be really painful.
Also, there's no such thing as flowers, colors, electricity or electromagnetism causing dislocations! That's pure and utter bullshit! Not even the lineup of Saturn's rings and Jupiter's moons can affect whether your joints dislocate or not! And not being able to do certain turns, in this case left turns, that's just absolute bullshit!
What can make someone with Ehlers-Danlos Syndrome dislocate however is putting weight onto a joint in the wrong way, moving the wrong way, accidentally pulling on a joint or it may happen just randomly without knowing how or why, I sublux in my sleep rather frequently for example, how the hell does that happen? And if your hips sublux or dislocate, the last thing you want to do is lie down and do a spread eagle because that will for sure dislocate your hips, not put them back in socket!
Many with Ehlers-Danlos Syndrome wouldn't be able to dance like seen in the episode, nor would we be able to get up from the floor or ground as easily and outrun a whole group of people- many of us can't even run! Oh, and forget about jumping out of a car through the sunroof without injury and then continue to run!
I'm really upset that TV is still airing this episode of Intervention, to us living with Ehlers-Danlos Syndrome it's doing more harm than good to our community and it's actually risking our safety as patients! And all that because of someone who claims to have Ehlers-Danlos Syndrome but hasn't been formally diagnosed by a doctor, or even fits the description really. But her body type suggests that there may be something going on with connective tissue, that's not for her to self diagnose though, she needs to see a doctor who checks her properly and run tests for Marfan as well, and she needs proper mental care because she's so delusional that she disables herself by the brain spooks! Plus the delusions about electricity and the other things she claims causing dislocations, is actually another dangerous thing in the EDS community. There are actually people that believe in it and all of a sudden get that symptom as well even though it doesn't exist anywhere else than in a mentally ill person's head!
Us living with Ehlers-Danlos Syndrome has it difficult enough as it is because we don't look sick on the outside, we have a hard time getting believed by medical professionals because they can't see anything wrong- until they look on the inside...
As for myself, I've had symptoms of Ehlers-Danlos Syndrome all my life, though no one connected the dots until I was 25 and my symptoms had started escalating rapidly. I had for some reason mentioned my issues in a forum and a friend there told me to read up on this thing called Ehlers-Danlos Syndrome. I read up on it and it was like reading about my life! I went to my doctor because I was in so much pain at the time and mentioned that I think my joints are too flexible, he did a quick test and sure enough, and referred me to see a rheumatologist. The rheumatologist checked my joints and tested me for rheumatic conditions, my joints were decided to be an 8 out of 9 on the Beighton scale, my rheumatic tests all came back negative. The rheumatologist didn't however know anything about Ehlers-Danlos Syndrome so I wasn't diagnosed then. I moved and got a new doctor just before seeing the rheumatologist and that doctor was more knowledgeable and even knew how to spell Ehlers-Danlos Syndrome without looking it up, she believed I have it but didn't have the authority to diagnose it so she sent me off to hospital for more testing. At the hospital I was checked by several doctors, but they were afraid of diagnosing from what I've heard afterwards. They did say though that I am very hypermobile and have many characteristics and symptoms of Ehlers-Danlos Syndrome. The only reason they didn't diagnose me on the spot was because my skin isn't elastic enough- while it is elastic and even more so than some of my diagnosed friends who were diagnosed by geneticists!
Time went by and I moved back to my hometown as it got dangerous for me to be 250 miles away from home all alone, I had issues with my heart racing and being very close to passing out both in the shower and randomly. The cause is most likely POTS or general Dysautonomia, but which it is, is yet to be determined as it's not formally diagnosed even to this day. The issues are still there though, I had a heart rate of 140 while sitting down when I got out of the shower earlier tonight, and I only just made it back to bed without falling.
Anyways, new doctor again, and this time it took a few more months, he read up on Ehlers-Danlos Syndrome too, and I do indeed have it! I'm a textbook case pretty much, and have been called that several times. But to be on the safe side, he sent me off for more testing by an independent team of experts who had met many with Ehlers-Danlos Syndrome before.
The physical therapist of the team was freaked out by my lose joints, the occupational therapist was shocked by how little it took for me to be in more pain, the psychologist could not prove that it was childhood issues causing physical symptoms (he tried though) and the doctor of the team who had not read my files before our appointment said after looking at me and talking with me, that it can be nothing else than Ehlers-Danlos Syndrome that I have, so I was diagnosed again!
I have since had MRI's taken, and even there you can see physical evidence of my Ehlers-Danlos Syndrome. I have no lordosis of my cervical spine for example and that can be an indicator of cervical instability. Fellow Ehlers-Danlos patients sees that I have a retroflexed odontoid bone with pannus formation- another visible sign of cervical instability. I also have what appears to be visible signs of instability in my lumbar spine, plus several bulging discs that may today have herniated as it's been close to two years since the images were taken. But that's where I am today really, trying to get some answers on my spine and neck as those are causing me a lot of issues, including issues with not knowing where I have my legs unless I see them and not feeling my bladder like I should.
I'll turn 30 this year, and while I have managed to avoid joint surgeries this far, I may well be facing fusion of parts of my neck and lower back in the future, and as for my other joints, only time will tell! My joints pull apart like one of those toys with elastic skeleton in them, you know, the kind you make with beads?
I have had surgery because of Ehlers-Danlos Syndrome though. My hysterectomy 1.5 year ago was needed due to how Ehlers-Danlos Syndrome affected my periods and me not tolerating or being helped by progesterone and not being able to take the regular contraceptive tablets. The progesterone I was on in attempts to control my periods made my joint laxity much worse too, that's something I'll have to live with for the rest of my life.
I also had dental issues when younger, I had some milk teeth that wouldn't let go so I had to have them extracted as my adult teeth had already started coming out, or trying to at least. I also needed adult teeth removed in my teens due to dental crowding and I wore braces for a while as well. I have a slightly high and narrow hard palate, that's something very common in connective tissue disorders.
Anyways, the episode of Intervention doesn't help Ehlers-Danlos Syndrome patients at all, the episode is built around a lie or possible lie and is so full of bullshit that even a bull would feel ashamed. I think it needs to be mentioned more clearly in the episode that it does not reflect what Ehlers-Danlos Syndrome is, at all, and that doing the things shown in the episode could cause severe injuries in someone living with Ehlers-Danlos Syndrome! Also, we're not drug addicts! Many with Ehlers-Danlos Syndrome don't even get high from painkillers, and if you do, you're on a too high dose and/or on the wrong painkillers! And for the most part we are on both long acting and rapid acting pain management. Rapid acting only can be a warning sign, and in Intervention, the person was only taking Fentanyl lollipops that are normally only given to terminally ill cancer patients or for very short term as they have so much side effects it's crazy!
I'm on the Fentanyl transdermal patch myself due to the severity of my chronic pain from Ehlers-Danlos Syndrome, I'm on a fairly low dose and have been on the same dose for almost 2 years now of continuous patch use. It's only rarely that I need to take any extra painkillers. Tonight I had to as I'm in a bad pain flare that had me in tears yesterday and has had me bed bound all weekend.
And to show you the difference between an average day for me and a bad pain day, here's a couple of pictures to show you what pain may look like!
It feels kinda odd to upload an image of myself when feeling so awful, but I think it's important to get the word out there and give people an idea what to look for when it comes to pain.
And when you are in bad pain, you can't hide it despite putting your greatest efforts into it. Another pain patient or a doctor will spot it! I for example, fidget a lot because I can't get comfortable, it's not something I even think about, but a friend I was talking with a couple of days ago over Skype saw it instantly!
BRAVO, Jen!! Thank you so much for setting the record straight. As a fellow Zebra I applaud your efforts to change the "face" of EDS and take the focus away from drug seeking, attention starved individuals and put it where it should be. There are men, women, and children who struggle every day with an invisible illness no one can see, and those are the people who should be recognized for how strong they are in their struggle.
ReplyDeleteThanks :) I just felt I had to put it out there! That episode has aired too many times now, and each time puts diagnosed Ehlers-Danlos patients, and people suspecting Ehlers-Danlos at risk, all because of one person who may or may not have EDS (I think not) and is only self diagnosed, along with being an addict and having all these delusions about things that doesn't exist! The most dangerous part is probably that there's a whole bunch of people who have been brain washed and actually believe in the delusions despite every piece of peer reviewed science speaking against it!
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