Tuesday, April 12, 2011

House M.D. and Ehlers-Danlos Syndrome

If any of you caught last night's episode of House on Fox you are probably as irritated as I am. The episode ended with a diagnosis of Ehlers-Danlos Syndrome, which under most circumstances would be an amazing thing. I am usually thrilled to pieces at the thought of EDS being mentioned on a mainstream show; we EDSers benefit highly from the public being familiarized with our illness. Whether using it to raise money for research to help find treatment options or even a cure for EDS, helping physicians keep an open mind during patient diagnoses, helping to create an understanding and loving network of family and friends, or helping an EDSer understand their symptoms better, media is a very effective and highly influential tool. Unfortunately, bad media attention can be even more damaging than no media, and most of the mainstream documentation of Ehlers-Danlos Syndrome, in my opinion, seems to be unhelpful or even negative.


*Spoiler Alert*
In the episode, House's team was treating a patient, and as his team often does, they headed to the man's house to see if they'd come across anything to help diagnose his illness. While at the home, they ended up finding his wife hiding under some garbage; she was a hoarder who had turned their home into a disaster area. They took her to the hospital, too, as there was something obviously wrong with her. The wife had some serious mental issues, and they were trying to find out what triggered the hoarding. While in the hospital she had a heart attack. The doctors didn't mention any other symptoms during the entire episode. Simply: hoarder, mental issues, heart attack. At the very end of the show, the doctors came into the woman's room and told her the reason she had become a hoarder was linked to stress from several miscarriages. They said the miscarriages were caused from Ehlers-Danlos Syndrome and asked her if she thought she could have EDS. They told her they could treat her symptoms, but that she also needed psychiatric treatment. Mind you, not once did they tell her what EDS was or what the symptoms are. That concluded the episode.

In my opinion, the show seemed to make it sound like someone who has miscarriages can, in turn, suffer from mental illness and become a hoarder -- symptoms that result in a diagnosis of Ehlers-Danlos Syndrome.

I love House; I have seen every episode and watch it on my computer each week. I suppose, for House, it was normal and enjoyable. To me, though, EDS is wild enough to support an entire episode. If the writers would have focused on a "normal" EDS case with the mounds of symptoms we have I believe it would have made for a very House-style episode. At the very least, an explanation of EDS to the woman would have been sufficient. They mentioned nothing about severe pain, joint hypermobility, skin issues, GI problems, fatigue, heart problems or any of the other many symptoms we experience. They didn't talk about how EDS can be extremely debilitating, nor was there mention that some types of EDS are life-threatening. Instead, they focused the episode on mental illness. To top it off, they didn't tell her what her diagnosis was, as most doctors do, instead they asked her if she thought she could have EDS. How would someone know what EDS is in order to give an educated answer? Most doctors I see don't even really understand EDS, let alone a patient who is experiencing none of the typical symptoms of this genetic disorder. I feel the writers could have done a much better job, successively making a positive impact by helping to promote awareness. Instead, it was another show that made EDSers seem crazy. 

I was very upset by this, especially so, because a week ago I went to the doctor for my psychological evaluation - the first step in getting approval to have a Spinal Cord Stimulator implanted in my back to help the excruciating flank pain I live with every single day. I will give you the specifics about the appointment in a post soon, but to summarize, I spent 5 hours in an office trying to prove I have flank pain, that my Ehlers-Danlos Syndrome is real (apparently my stacks of medical records, info from all of my doctors and the geneticist's diagnosis don't prove enough), that I don't want to kill myself and that my pain is not just a product of my mental illnesses. The majority of the appointment was spent doing personality tests that were hundreds of questions long. It was emotionally and physically exhausting, and if I don't get a "passing grade," I won't be able to have the SCS trial. After all of this, watching an episode of House that portrayed EDSers' most prominent symptoms as psychiatric problems was extremely disappointing. 

While I have no control over what the writers of the show create, I do have a chance to take a stand. I am voicing my opinion, helping to spread awareness of Ehlers-Danlos Syndrome, and making a positive impact for the EDS community -- something House M.D. had a chance to do, but failed at.

I hope you are having a wonderful night. Continue to keep hope, be strong, and stand with me. In the face of negativity, we will be the positive light. 

xo
dani

17 comments:

myguitarplaysit said...

A really good friend of mine has EDS and I actually decided to go poking around because I wanted to see if there were any reactions. The only other show I've really seen EDS posted on was Bones, where a person was found to have EDS and also happened to be hella OCD. Nonetheless, I completely agree with the rubbish that TV is putting out about this illness. For the most part my friend can't even really find doctors who know what it is and needs to help them through the process of figuring out what it is.

Are there any other treatments coming out? Hers seems to mostly involve stretchy skin and dislocating joints (previous organ mobility, but surgery fixed that). Ideas?

Anonymous said...

not unusal for the public channels to do a poor job on ehlers-danlos
linda simmons

Rhondalyn said...

I was diagnosed with EDS at a fairly young age 14 or so. I started having joint reconstructions at about 12 years old.. and over the past 35 years I have had nearly every major joint reconstructed at least once. I have been lucky to stay out of a wheelchair.

My frustration - the stigma that is placed on EDS ... even from doctors. We are looked at as crazy or drug seekers. I'm sorry but with dozens of joint surgeries over the course of my life.. they REALLY think I am making up the pain??

I am not much a fan of taking medications.. for the most part, I use my pain to limit me.. otherwise i'd be trying crazy things like climbing Everest...ok maybe not Everest, but you get the point ;)

I would take T3 - occasionally T4 when the pain is especially bad.. but every time my doctor wrote a prescription.. he'd look at me as if he was enabling a crazed drug addict. (BTW - I have never so much as smoked a joint.. and i don't drink) Frustrated with his judgment, more frustrated with the lack of available doctors.. I made a decision to go off pain medication and attempt to manage pain thru exercise, ice, heat, natural anti inflammatories

So what happens when I tell my doctor that I am going to try managing the pain without pain medication? He said "Welcome Back" .. OMG Are you serious? He thought I was some crazed T3 junkie?

After my latest knee reconstruction a couple of months ago.. I am at the worst I have ever been.. both of my shoulders have given out, from use of the crutches, my back is in spasms so intense i can’t stand straight, and my other knee has deteriorated due to the extra load required during rehabilitation..

The stigma put on people with EDS is making me feel like i have no choice but to suffer..

Yep.. Way to go House.. now the rest of the world can think we are crazy too :P

rebeccacarson said...

so lame! my daughter has EDS she is 7 and this is something she will deal with for the rest of her life! I love her and hate seeing her in pain her feet and knee pain is so tremendous sometimes that she doesn't want to even walk.

Carrie said...

Iv blogged about the same episode and a few other instances of EDS being very badly represented on TV. We have a hard enough time with Drs treating us like attention seekers, fakers or chronically depressed. Get the complaints in to the tv channel like us brits have done with a few shows that have similar EDS stories. Its the ony way they will eventually understand that this illness is painful, disabling and sometimes life-threatening. http://livingbendy.blogspot.com/

Anonymous said...

Hi,I found your site because of a link posted in the House md forum.I was a bit frustrated myself by the diagnosis not because I suffer from this disease but because it wasn't explained at all.Some women who have miscarriages become hoarders without having a single other thing wrong with them so why this was linked to EDS if they weren't going to bother explaining what this illness actually is was a waste .I certainly hope that now that they've heard about the interest about EDS and the disappointment about how they presented it ,the producers of House will devote an entire episode to it rather than make an indirect reference to it.
I really hope your tests went well and that you get the stimulator you need.Best of luck to you in your journey.
Marie

Appleshoe said...

Hello again, diagnosed at age 6 with ehlers. On one hand it's annoying and on the other if half the "real" doctors out there don't know what Ehlers is how can we expect the entertainment industry to get it right? Just having the name mentioned helps the general public know that it is a real disorder even if they don't get all the facts right. "Hey I saw a TV show and someone had that thing you have". Linking Ehlers to hording was not direct but still annoying. Most people I know with Ehlers are meticulous when it comes to housekeeping to help prevent injury. Just my 2 cents, have a blessed day.

Anonymous said...

I will throw my comments in on the discussion too.... I love house... but as a person with the eventual diagnosis of the patient in this episode, ehlers danlos syndrome, I was hurt by the way the writers tied up the episode. Ehlers Danlos is rare, and often misdiagnosed... but there is LOTS more too it than just miscarriages. The writers should have explained more about the diagnosis and given a little more time and respect to EDS. They jumped to from hoarding, to miscarriages, to EDS in seconds. People with EDS are often accused of psychological problems due to the misdiagnosis and the medical system often dismissing our symptoms as coincidence. We look are often made to think our symptoms are in our head... despite genetic evidence it is real. The last thing EDS patients needed was the further stigma of hoarding attached to them. The transition from crazy hoarder to ehlers danlos was too quick. And then to add further insult to us real EDS patients, the writers said that the symptoms could be manged... and well that is just not true. People with EDS have a lifetime of pain and potential problems. There are many types of EDS and a variety of ways it can effect people. Also, no good doctor would use JUST the symptom of miscarriages to jump to EDS. There would have been a few key questions used by all doctors called the Brighton criteria used to establish a case of EDS. None of those factors were tested or mentioned in House. Finally, for a doctor to affirmatively say Ehlers Danlos Syndrome as a diagnosis, there is a genetic test. Its not an easy fix as almost implied at the end. I have been an avid fan since season one... yet somehow, my favorite show has now left me hurt, and embarrassed. You did all EDS patients a disservice and added unnecessary psychological stigma to an already misunderstood condition.

Anonymous said...

Interesting post. I both agree and disagree with you. I have lupus, which is something of a House joke. However, I'm not bothered by how the show portrays it. I think the vagueness interests people. I saw this episode of House and, not knowing anything about EDS, went to the web to look it up. I don't expect completely accurate information from a TV show, but I've learned something new because I heard about it.
My take on the diagnosis was that I thought she already knew that she had the disease, knew why she had miscarriages but was keeping it a secret from her husband (not completely believable to hide something like that for so long but it's TV) - they did say the episode was about hiding secrets, so she must have already known or there would be no secret.
Anyway - I think shows like this help with all diseases they mention because it's bound to make a few people curious enough to look for more information and that helps everyone.

ElastiGirl said...

All I can say is: Wow. Almost to a word, I had the exact same reaction to the House episode. As an EDSer (classical type, dx about 5 years ago; POTS also; and awful migraines), I have been thrilled to see EDS, Chiari malformation and POTS on Mystery Diagnosis. There was also a Bones episode that featured EDS, and we got a brief mention on House a few seasons ago. I also LOVE House, and I figured they'd get around to EDS eventually--I mean, every one of us has a long, crazy story about how we finally got to a diagnosis. Such a missed opportunity! I actually enjoyed the hell out of the episode, right up until the insane EDS dx. At that point, I paused the TiVo and stared at the screen with a perplexed look on my face. I was watching the show in the middle of the night during a frequent bout of insomnia, so I was rather exhausted--I figured I must have nodded off during some crucial segment. I did a quick rewind of the 30-second dx explanation, and then I watched the show again later with my boyfriend to make sure I didn't miss something. He looked around at my very messy house with its piles of unopened mail and heaps of junk in every corner and asked me very pointedly if hoarding was really an EDS symptom. (Oh yeah--I had a miscarriage, too...) The only saving grace was that the House team's EDS patient wasn't a circus freak. Sigh...

Anonymous said...

I'm from MN.The university of MN is the proud papa of the MMPI Minnesota Multiphasic Personality Inventory.Yes,it serves a purpose. But like a good diagnosis of EDS,the answers,or symptoms are only as good (read valid) as the evaluators capacity to UNDERSTAND THE RESULTS!!!Or,narcotic "seeking"is in the eyes of the Dr.....as is PTSD anxiety an "attention seeker." Hang in there! Reallyso

Anonymous said...

Hi Daniel,

Your blog is very positive, very informative and last but not least, brave. I think you still got the fight in you and I really hope your attitude stays with you no matter what this illness throws at you. It's not easy, but you have come this far!

I just saw the episode of House and started searching for EDS and that's when I came across your blog. So you are right about House helping raise awareness of EDS. Even though they didn't get it right, the did EDSers this much favor of increasing awareness. I was horrified to read all the symptoms and to see the response of the medical industry denying someone who needs it the most.

I just wanted to post on your blog and pray for you. If my prayers are answered through god and you have one pain-free day, I will be happy. God bless.

Anonymous said...

I once saw an episode of Law and Order, I think it was SVU where there was a lady who had some kind of illegal abortion after it was past a time to perform one or something all because her child would be born with EDS. I cried during this episode and thought to myself what if that was my mom who found out, although I know my mom wouldn't have done that, but still. What if now people out there find out they are going to have a baby with eds and abort because of it. I know it is there choice, but I still find it kind of disturbing that now some people with eds may not to have a chance to live. I know this is controversial and I am all for a woman's right to chose, but it doesn't seem quite right to me. This was bad media coverage. It only focused on the worst possible scenario and tells people to not bother in a way, but at the same time the mom went on trial, so.... I don't know, just thought I should mention it.

posty said...

I disagree completely with the fact that the show misrepresented anything. I didn't know anything about Ehlers Danlos. In the show, I remember distinctly them asking her- we think you have Ehlors Danlos syndrome, which has caused the SYMPTOMS (she was sick.. remember???) Then they said we believe that that has caused the miscarriages, which has LEAD to your hoarding. The reason why I looked up Ehlors Danlos was to see what are some syndromes that could cause a miscarriage... I was surprised to see how the writer interpreted the show... strange...
So, basically, she has loose joints, decrease in collagen production, which is associated with miscarriages in some women with the syndrome.

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sevda said...

Hi Dani,
İ wonder if which season, which chapter do you know? İ would like to warch it..

Tnx
Sevda

Anonymous said...

They have linked EDS with altered Serotonin levels. And Low Serotonin levels can result in OCD type behaviour, one of them being OCD. She would most likely have had VEDS if in regards to miscarriages? I'm disappointed if House did a poor job. I too, like the show.