It took 40 years to receive my EDS diagnosis

Posted May 22, 2020

Nicki's story

May is EDS awareness month and I’ve decided to take part in the #myEDSchallenge by writing about my own personal journey. 

I am 47 years old and became symptomatic in the 1970s with a collapsed bowel, resulting in various visits to children’s wards at both St Thomas’ Hospital in London and my own local hospital. Treatment was very draconian and painful. I was punished at home for not being able to control my bowel and this left me with huge scars psychologically. Unbeknown to everyone I was actually suffering from a delayed small intestinal transit which shockingly wasn’t tested and diagnosed until seen by a top neurogastroenterologist in the Ehlers-Danlos syndrome (EDS) world, Professor Aziz – I was 46 at the time. 

In a study one of my older siblings carried out on my development, as part of her nursery nurse studies, she wrote, ‘8-9 months, Nicola can sit unsupported but has very little control once she starts to fall. She sits with her legs wide apart and has amazing suppleness and agility, and from this position, she can lean right forward until her faces touches the floor. She dislikes being on her tummy and soon becomes miserable because she doesn’t like holding her head up.’ 

With hindsight, I find this an amazing insight into my undiagnosed condition at the time. As time went on I suffered from severe tonsillitis and ended up having my tonsils and adenoids removed in my early teens. I also experienced overcrowding of my teeth and had 8 teeth extracted under a general anesthetic,  followed by years of orthodontic work. My first experience of joint pain was when I slipped a disc at secondary school during a gym class, which has led to severe osteoarthritis in my spine, including mild retrolisthesis where the vertebra has dislocated. My knees sublux, and I underwent surgery in my 40s to clean out my left knee along with my left hip due to various impingements – I’ve since learned these are all common in EDS. I’m currently awaiting an operation to clean out my right shoulder, which is arthritic and torn. During my teens I started fainting and always found it strange that despite my stature I couldn’t stand upright for very long without getting dizzy.

Following tilt table testing at Queen’s Square in my 40s I was diagnosed with autonomic dysfunction, where the veins are so stretchy in my legs that the blood isn’t being carried around my body sufficiently and I experience blood pooling in my legs, causing my blood pressure to drop massively. The test proceeded and I was finally diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) at the hypermobility clinic at University College London Hospital (UCLH) when I turned 40. 

After that everything seemed to come together and the dots were all connected. The chronic urticaria I also experienced 10 years prior to this was finally linked to my EDS, by way of a mast cell activation disorder (MCAS) and I’ve been seeing a dermatologist ever since who has a special interest in mast cells, back where it all began for me at St Thomas’ Hospital. More recently I’ve been diagnosed with gluteal tendinopathy and bilateral trochanteric bursitis. I had EDS all my life yet it took 40 years to diagnose which is sadly often the case which is why we need to share and help raise awareness.

#myEDSchallenge

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