How I wish people knew about EDS….

I was in hospital last week for an x-ray on my shoulder.  This is the latest investigation after two years of searing pain in this shoulder (which I have always been able to sublux at will).  It was found that I’d grown a spur of bone (common in the elderly I’m told!) which has been digging in – not the dozens of things they tried first before actually x-raying it.

While I was waiting, a young girl was playing in the corridor.  I noticed her joints were bending interestingly, and when she did the splits I started a conversation with her mother and asked if she could do the typical Beighton tests.  Of course she thoroughly enjoyed showing me her bendy thumbs, fingers and knees.  Yes, she could sit in the ‘W’ position and yes, she had flat feet, etc.  She didn’t look symptomatic (but we all know that experience!), and may well not be.  Her mother looked surprised at my own finger movements.  “I’ve never seen anyone else’s fingers bend like that!  I thought my children were the only ones who could do that.” As we continued chatting it emerged that her adult son had all sorts of symptoms consistent with EDS.  He had severe health issues, especially with his feet.  His ankles were causing him so much pain that he had had one amputation and was going to have a second foot amputation in a week’s time.

I was rather shocked, to put it mildly.  She had never heard of EDS or hypermobility and her son had never had a proper diagnosis for his foot pain.  I was left feeling perplexed that even doctors are still so ignorant of EDS, and told her to start googling!  A chance encounter……but then we didn’t know what was wrong with us until a chance encounter with a physiotherapist who we were visiting for something else.