Tuesday, 5 May 2015

Ehlers Danlos Awareness Month

May is Ehlers Danlos awareness month.  On social media every month seems to be an awareness month for something so why should you be made aware of Ehlers Danlos Syndrome? The simple answer is you need to be aware because most doctors aren't.

If you suffer with joint pain, fatigue and are hypermobile you may have EDS and not even know it.

EDS is a genetic connective tissue condition that is a multi-systemic syndrome.  That means if affects just about every part of your body, you skin, your joints, your muscles, ligaments and tendons, your internal organs and gastrointestinal tract.  Everything!  I causes pain, disability and the vascular type can be fatal.  There is no cure.

EDS is invisible.  You can't see it and it doesn't show up on blood tests so it's very difficult for doctors to diagnose it.  Getting a diagnosis is especially challenging because most doctors do not have current information about it.  I recently spoke to a doctor in Accident and Emergency.  He said he knew all about it, then he quoted information that was inaccurate and at least 10 years out of date.

Doctors are taught about the extreme symptoms, the super stretchy skin, the permanently dislocated joints and the fatal aneurysms of the vascular type.  They are told that EDS is one of those rare diseases that if they ever see a single case in their career, they will never see another one.  It's no wonder they are reluctant to diagnose EDS!

I have hypermobility type, it's the most common type and it's diagnosed by the presence of hypermobility and pain.  Some people are naturally hypermobile and are perfectly healthy but if the hypermobility causes pain and soft tissue injuries then EDS may be diagnosed.

The Beighton Scale is often used to diagnose EDS but it only assesses a few joints and was never meant to be used as a diagnostic tool.  This means that some people are told they don't have it because they don't score enough points.

I am very hypermobile in my ankles and shoulders but as they are on the scale they don't count and I was told I didn't have EDS, but when I was examined by an experienced doctors at The Hypermobility Unit in London I was diagnosed.

EDS also causes many other problems, which makes it difficult for doctors to diagnose us.  How can we have so many things wrong with us?  We must be hypochondriacs!

EDS patients can suffer with dizziness and fainting when we stand which is caused by Postural Orthostatic Tachycardia syndrome.  EDS patients suffer with chronic pain from partial dislocations, bursitis and muscle spasms, we injure ourselves easily, we might be clumsy and we bruise easily too.  Some patients suffer slow gastric transit, nausea, constipation and even gastrointestinal failure.  Basically think of a body part, if there is collagen in it then EDS can affect it.

There are several other kinds of EDS, including classical type which causes skin problems and the vascular type which sadly can be life limiting.  It can affect people in different ways at different times. One day you may see an EDS patient in a wheelchair, the next day they can be walking.  They aren't faking it or doing it for the attention, they are struggling with a complex condition and doing the best they can.

So why should you be aware of EDS?  Because more research needs to be done to help people with this complex and incurable condition and it's not as rare as doctors might think.  For a start, it's genetic and there is a 50% chance the children of an EDS patient will also have EDS.

Perhaps you know someone with ME, CFS or Fibromyalgia who is hypermobile and fits the EDS profile?  Being aware of EDS can mean getting the right diagnosis and that might just change their life.

If you want to know more about EDS visit the Ehlers Danlos Support UK website.

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