The Drama of EDS - The TV Freakshow

EDS is becoming the subject of TV dramas as the condition is becoming more well known. You would expect that this would be applauded by sufferers and their families as a much needed awareness achievement. However the storylines used by show writers using the condition to boost their ratings are failing to raise any awareness of what living with the condition is really like. Instead EDS is frustratingly becoming the freak show storyline causing more confusion and increasing ignorance surrounding the condition.

Last night's episode of House sparked a flurry of complaints and discussion on social network sites just weeks before May becomes EDS Awareness month in many American States.
While support organisations work on the finishing touches of awareness strategies and campaigns for more funding for essential research into what can be a fatal condition, they are sidelined into dealing with the aftermath of another poorly researched storyline causing upset and anger amongst sufferers.
The episode focussed on a woman with a severe anxiety disorder that culminated into an extreme state of hoarding. The character's house was filled to the ceilings with years of personal belongings, rotten food and even a dead cat in the freezer.
The hoarding caused the woman and her husband to become ill from a disease caused by raccoon droppings. The husband quickly recovered while the wife was suddenly struck down with a heart attack. A few scenes later and House's medical team discover the woman had suffered three miscarriages which sparked the anxiety and hoarding.
'You have Ehlers Danlos Syndrome which explains the symptoms and probably caused the miscarriages. We can treat the symptoms as they occur'.

Most people with EDS watching the show did a double take as her diagnosis was so quickly achieved wondering if they had missed a few scenes while making a coffee.
'Did I miss something?' One EDS sufferer asked her husband...'No you heard it right' was his reply.

I watched the show knowing the expected diagnosis so looked for small clues but other than the heart involvement there were no clues that an EDS diagnosis was to come. Even then heart attacks are rare in people with EDS and are not a known symptom or complication of the condition.
In the Vascular type of EDS patients are at risk of aneurysm in the brain and heart and it is this rupturing of the heart vessels that leads to death, not heart attacks.
The only symptom that connects to EDS is anxiety. Anxiety disorders are very common in EDS but feature more in the Hypermobile type, not the Vascular type. As the woman had no joint or skin involvement the only possible way that EDS was believable is that some patients with Vascular EDS can be affected with no joint or skin involvement and the condition is only discovered following death from an aneurysm. It seems totally implausible that a patient could present with no joint or skin symptoms, no signs of aneurysm but then quickly and easily reach a diagnosis of EDS because of repeated miscarriages and anxiety.

The main concern of EDS sufferers watching the show is that this story line has only fuelled the already present attitude amongst some doctors that EDS patients have a tendency to have mental health problems.

A recent episode of Casualty, a medical drama by the BBC (UK) included a very small scene of a patient with EDS appearing in the A&E department with a dislocated shoulder. The Dr quickly pushed the joint back into place WITHOUT pain relief or any warning and then told another DR that the patient dislocates his joints ON PURPOSE in order to obtain morphine.
This storyline also fuelled outrage and upset amongst the online EDS community with the BBC receiving many complaints.
A lot of people with EDS refuse to go to hospital following a dislocation having received terrible treatment and attitude from Drs who do not understand the condition in the past. Some patients have been accused of dislocating their joints on purpose for attention as drs refuse to believe that joints can dislocate so easily without force repeatedly. Others have been refused pain medication for a dislocation as drs believe that the patient does not need it if they can relocate their joints easily.

I myself have avoided attending hospital for dislocations because of previous treatment. Having been sent to A&E directly from a hydrotherapy session that left me with drop foot and numbness in my left leg the consultant dr on duty asked me 'What leg do you THINK is numb'. Set back for a few seconds by his intended meaning I explained that I was sent by the physio and that I had not come of my own accord. But with a past history of depression the Consultant jumped to the conclusion that I was either attention seeking or that it was in my head.
My physio discovered a few days later that I had suffered from a build up of trapped nerves in my spine that had bulged during the hydro session but later released themselves of their own accord, not uncommon in EDS patients.
I have only attended A&E once since then following a fall and was lucky to be seen by a different Dr who was over cautious and kept me in for observation. Luckily for me this turned out to be a blessing as monitoring showed erratic blood pressure and heart rate which led to the first suspicion of POTS.

Another show which instigated anger was another BBC show, shown just weeks before the episode of 'Casualty' which also received complaints. Some of these complaints were addressed and received promises to look into any misrepresentation of the condition in order to improve further mention of EDS on the BBC.
The show 'Freak like me' followed a young girl who 'loved clicking her body'. The girl, undiagnosed, would click all her joints, including her hips and shoulders, many times a day. The show addressed this as a 'freaky habit' with no mention of the medical danger of this behaviour. Many EDS sufferers who saw the show wrote to the BBC asking them to inform the girl that she should look into EDS due to the obvious extreme hypermobility of her joints and other signs that she may have the condition. What upset EDSers is that the actions she took to 'click' her joints were similar to that they needed to do to relocate dislocated and subluxated joints. They were not only worried that the girl could be causing long term damage to her body but that the BBC had not looked into the medical risks of such behaviour which could have made them aware of EDS in order to give a medical warning to viewers.

It seems that EDS is becoming the condition to use if show writers want an interesting storyline with a freakish twist but they are failing to show even the basic symptoms of recurring dislocations, chronic pain and mobility problems. Instead they are using the condition to highlight drug misuse, mental illness and freakish habits.

The only hope is that writers of Coronation Street, a UK soap opera, uses the character of Izzy, a wheelchair user with EDS, to highlight some of the effects of this chronic and disabling condition. Izzy is played by actress Cherylee Housten who also suffers from EDS who, when joining the show, sparked interest and hope from the EDS community that her character would have the condition involved in some of her storylines. However, so far, there has been no mention of 'Ehlers Danlos Syndrome', only 'a degenerative disease' and a few small mentions of being able to stand and walk 'which makes people think I'm faking being in a wheelchair'.

We know that EDS is rare and there are many more interesting conditions out there to boost ratings but all the EDS community ask is that if writers insist on using the condition in their storyline that they stop using it as a basis for freaky and offensive storylines that are only adding to the misunderstanding and potentially damaging attitude amongst Drs. Instead show EDS sufferers the respect and admiration they deserve living with a painful, life changing and sometimes fatal condition.

New Rheumy, New hope?

I recently saw my new EDS rheumy(rheumatologist)
For people with EDS, the rheumy is the top of the food chain when it comes to our long list of drs and medical professionals we see regularly.
He is the guy who is the EDS expert, the one who understands what EDS is, how it works and how it affects our different body systems...that's when we are lucky enough to finally find a rheumy who specialises in EDS!

The EDS rheumy is the wedding planner of our medical care. He coordinates all the other drs, decides what should and shouldn't happen and pulls all the other drs' tests, work and ideas together to get a full picture of what is going on in the EDS body. He then rolls out orders to the GP (family dr) to refer the eds patient to new specialists if needed, order more tests, start new or change current treatments and keep him up to date with what is going on. He will also contact other specialists working with the eds patient either directly or through the GP to discuss current treatment with the aim to either stop proposed treatment/surgery (an orthopaedic surgeon may think ligament tightening surgery will stop a joint dislocating but a EDS specialist may suspect that it will not with this patient), suggest treatment or avenues of investigation the other specialist hasn't thought of, or simply just to keep uptodate or create a new network with the specialist for future patients.

My previous EDS rheumy was one of the country's (and world's) leading EDS/HMS experts. Professor Howard Bird has made some of the most important discoveries and moved the research and treatment of eds/hms forward massively since he began taking a special interest in the condition in his early career.
His retirement shook the eds/hms community and the proposed closure of the specialist clinic that he had set up in Leeds, UK was feared.
I had been lucky enough to have been a patient of Prof Bird for 1 year before his retirement. Although I had received my diagnosis in 2007 I hadn't received any real treatment so was finally refereed to Prof Bird in December 2009 where I received a thorough assessment. It is here I found out how bad my body was affected, how much my joints had deteriorated due to lack of treatment and how I had developed scoliosis (curvature of the spine) and osteoarthritis of the SI joints (where the spine meets the pelvis.
It was also Prof Bird who noticed the obvious EDS characteristics in my Mum and due to taking such a detailed family history we discovered that both my parents had the EDS gene. My mother very affected, my dad only mildly. My mum has since gone on to receive treatment for pain and physio and is now waiting her initial appointment with my new rheumy.

So back to my new eds rheumy.

I had been given his details before my final appointment with Prof Bird by a fellow member of the Hypermobility Association (HMSA) who recommended him highly. I knew that with Prof Bird's upcoming retirement I would have to find a new rheumy experienced in EDS.
I was told Dr S. was a great dr and Prof B agreed that he would be the best rheumy for me.

My 1st appointment couldn't have gone better. Dr S. and his staff were very welcoming and pleasent and it didnt take long for me to relax and laugh at an unfortunate gramatical error on a recent discharge note with him.

We covered my current EDS issues, mainly my ongoing gastointestinal deteriation and
a new set of symptoms that some drs are suspecting could be indicative of Postural Orthostatic Tachychardia Syndrome (POTS), a form of Dysautonomia that can occur in EDS (see links at bottom for info on POTS)

I was in with Dr S for over an hour! I had to apologise profusely to the lady following me but she didnt mind 'at least he's thorough' she said. That he certainly is.

I then had lots of bloods taken.

I received a copy of the letter Dr S wrote to my gp within days.

He has requested a referral to Prof Aziz in London for my GI issues with a referral to a local GI consultant with knowledge of EDS for long term monitoring.
He has also requested that I have a number of tests done before I see my endocrinologist at the end of January. These are to look for other causes of my dropping blood pressure and raised heart rate that suggest POTS just in case.
Finally Dr S has requested copies of all correspondence from physio, orthopedics, pain clinic, endocrinology, past GI investigation and recent xrays, mri (hips and spine) and an endoscopy I am due to have next week. (To see if there is anything non-EDS causing my upper GI symptoms).


I will not be having regular follow-up appointments with Dr S as I already spend at least 1 day a week at hospital with appointments. Plus Dr S is trying to set up a eds/hms clinic and it is not financially viable to offer regular follow-up appointments to all patients.Instead Dr S said I can phone up and ask for an appointment if I have any serious issues or I can arrange a phone appointment.

I am looking forward to seeing the eds/hms clinic taking off with Dr S as it is very much needed in the North East of England.
Dr S admits he may not have the knowdlege and expertise of Prof Bird, after all he is only young and just starting his work with eds/hms patients, but he is very open and the most important thing is that unlike some drs, he will take the patient's suggestions and concerns when deciding on appropriate progression of treatment.

I am really looking forward to working with my new rheumy for the coming future and hope that as one of his patients that he will learn something from me.

links for further info :
Postural Orthostatic Tachychardia Syndrome (POTS) - http://www.dinet.org/pots_an_overview.htm

Deck the halls and all that stuff!

Hi everyone,

First thank you all to everyone who has contacted me to let me know that my blog is helping others to understand EDS/HMS and also offering comfort to fellow bendies.
Its hard sometimes to come on and write about the month I've had but now that I know that it is helping others I have more reason.

So how have things been since October?
Still waiting to be rehoused and currently living in my extremely bare flat having packed everything ready for my proposed move a few weeks ago. Still here and possibly for another few months but loving having very little to tidy or trip over!

I enjoyed a wonderful birthday, my favourite present was the entire works of Shakespeare found in an old 2nd hand book shop from my boyfriend.

So on to the health stuff...

As predicted the winter is hitting hard and its been an interesting few weeks trying to keep up with my EDS.

My physio became very concerned about my hips after they started to subluxate (partially dislocate) repeatedly during the day. An x-ray has shown 'some structural abnormality' but until the official report comes back from the radiographer they won't tell me what exactly is 'abnormal'. There are a few hip issues that are more common in EDS due to the increased friction from the movement in the joint or from the recurrent dislocations/injuries.
I see a specialist physiotherapist in a few days who needs to assess my hips and pelvis so they can refer me to an Orthopaedic surgeon who will then decide if surgery is needed.
The pain in my hips has become very bad and touching my upper pain threshold so I have finally be referred to the pain clinic.

Last week I passed out and fell badly in my kitchen. It was the first time I used my falls alarm and now realise just how essential it is. The nurses got to me quickly and I was sent to hospital for xrays and pain relief. I expected to be sent home that night but my heart and blood pressure weren't behaving and I was kept in overnight.

My heart rate and blood pressure were monitored through the night and in the morning I was told that I could possible have POTS (Postural Orthostatic Tachycardia Syndrome). This is a condition that basically means your body has become allergic to gravity. It affects the Autonomic system which controls heart rate, blood pressure, temperature control and other essential systems. There are various reasons people develop POTS including as a result of a primary condition, in my case EDS.
If the falls continue I will have to be tested for POTS.

Hearing this was not especially great as I know how bad POTS can get and also how it can cause more complications in EDS.

For more information on POTS see the links at the end of the blog.

Generally I feel really rubbish and think this has to be the worst I've been so far with EDS. However I have been through so much worse in the past and know that whatever happens it's how you approach the challenges that determine how they affect you. As usual I am staying positive (although a little harder than usual), and focusing my energy on just keeping safe and warm over the next few weeks.

I hope that you are all having a great snowy week. Please comment and continue to share your EDS stories. If there is anything you would like me to discuss in a future blog please let me know.

Hugs and prayers to everyone

Cx

More info:

What is POTS? - http://www.dinet.org/ -POTS place. info on POTS and other types of Dysautomia.

POTsgirl's video - http://www.youtube.com/watch?v=OvENfW6scZk - great video explaining POTS simply and to the point.