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Diagnosis at last!!

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Those of you who have been around for a couple of years may remember a thread asking if anyone had come across a set of symptoms which my 9 year old granddaughter was displaying.........mostly frequent dislocations of most of her joints - thought you might like an update.


After nearly 3 years, many, many visits to A&E (hours and hours of waiting), tests and appointments, time off school for appts. physio after each episode of dislocations........


........having to cope with a primary school that was unhelpful and disbelieving, classmates who thought she was a liar causing increased bullying then on to a secondary school which has been so helpful......and hospital staff who must have wondered if we were all child beaters :roll:


We've recently had a family visit to a geneticist and Lauren has had the diagnosis we need to be able to take things further and get the help she needs. She has EDS type 3 (Hypermobility) which is a genetic collagen defect, and the research into the family medical history shows that quite a few of us have it with varying degrees of severity and that it has been passed on by me ( :( ). It has been like a big jigsaw falling into place.


It's been a difficult few years for Lauren and she copes very well. We all have more tests to come but it is so much easier to be able to put a name to all the problems. Here's to an easier 2010!!

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That must be such a massive relief for all of you. I know from my own recent experiences how it feels to finally have a diagnosis after waiting such a long time when you know that something is wrong.


Keeping everything crossed here that Lauren gets the treatment/help she needs now.



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Thanks for posting this. I have hypermobility and my daughter is starting to show signs - I had no idea there was a possible genetic link. As I've got older I don't get dislocations (well, I didn't get full dislocations, but joints popping in and then out again) and have been told exercise and keeping fit to strengthen the muscles to support the joints helps. Sadly I'm overweight and unfit, so there's my New Years resolution....!


Took me about 15 years to be diagnosed, so I feel for her. It's a relief to know that it's not hyperchondria as the doctor made me feel a bit round the twist :think:

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