Thursday, 24 May 2012

Ehlers-Danlos Awareness Month

This month is Ehlers-Danlos (EDS) Awareness Month.  I was diagnosed with the hypermobility type of EDS in 2009. EDS is a connective tissue disorder it can affect many systems including the gastro-intestinal and autonomic systems.  I am currently awaiting testing for postural orthostatic tachycardia syndrome (POTS) which is a form of autonomic dysfunction.  EDS can cause widespread chronic pain and fatigue, but to most people you wouldn't realise it because it is a hidden disability and unless we happen to be using crutches, a wheelchair or other aids it is not noticeable to the average person this can lead to people being wrongly accused of making it up to gain access to strong painkillers.

A lot of doctors do not know about EDS and have not learned much about it since leaving medical school this means that a lot of people go undiagnosed for a very long time.  I myself started to get dislocations at an early age but wasn't diagnosed until I was 25.  This seems to be a common theme among EDS patients who according to the poll on the HMSA website 53% didn't get diagnosed until 10+ years after the start of symptoms.  Many have gone through several diagnoses before seeing someone who was knowledgeable in the condition.  There are very few clinics in the UK that specialise in hypermobility syndromes and the ones that are available are incredibly over subscribed.

My hope for the future is that more doctors learn about EDS and that less people have to go through the long journey to getting diagnosed.  The two charities HMSA and EDS-UK are doing great work to increase awareness of these conditions.  I am incredibly grateful to the HMSA and my friend Lisa as without their advice and guidance I would not have got the diagnosis and possibly would have had many more years trying to figure out what was wrong with me.  This years HMSA conference theme this year is "Moving Forward and Staying Positive"  so hopefully there will be a lot of positive information coming out of the conference this year.

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