I was flicking through the Guinness Book of Records today and saw a guy with really strechy skin (just like mine) and it said the guy suffered from Ehlers Danlos Syndrome. So, I looked it up and sure enough, all the symptomes I've had my whole life, such as bendiness (all my toes can touch the tops of my feet, my thumbs bend back 180 deg to their original position, and I can bend my fingers well over 90 deg from inline with the knuckes), strechy skin (just like the picture, I can also pull the skin on my elbow and fit my fist inside (kids love doing this and going ewwww, only to do it again), slow to heal injuries and bad joints (well one knee has given me grief since I was about 10.
I'm now late 20's what should I do? I've never realised that it was a 'syndrome' but rather i was odd. I was born 5 weeks early and I've always put my bendy joints down to that.
Cheers
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You need to see your doctor - make an appointment, and discuss the tests you need to think about to ensure early detection of problems - such as an echocardiogram of the aortic root.
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It's been a while since I was at school but isn't that an xray or ultrasound of the heart?
Should I just see my local GP or go to a specialist, any recommendations appreciated.
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Its a trace of your heart beat. I see Dr Philip Wong who works out of QualityHealthcare in Princes Bldg and Adventist for my cardiology problems/issues. Have no idea of link by docboat between your symptoms and an ECG however but I'm not a doctor and maybe he/she is! Maybe see your GP first as you'll need a referral anyway to a specialist if necessary.
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EDS
If indeed this is EDS, you probably know one or two relatives with similar symptoms? However lax joints do not necessarily have to be caused by EDS!
In the majority of cases having EDS does not alter your life much apart from the facts you mentioned. You probably have to inform a surgeon if suturing of skin is required, but otherwise things are normal.
As this is a disorder of collagen, it is worth screening to ensure that the vascular system (also made up of collagen) is not affected. Furthermore, if you are intending to raise a family, you may want to find out what the inherited pattern of your ailment is (if any) and what the effect on your offspring might be.
The best first step is to see a specialist to make a diagnosis (skin biopsy). We could assist to source a specialist for you in Hong Kong.
Matilda Medical Centre 2537 8500
Matilda International Hospital
Hong Kong
http://www.matidlda.org
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Many thanks Matilda, I'm going back to the UK for two weeks this weekend, but I'll definately give you guys a call as soon as I get back.
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can you post a note under medical?
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