What is Ehlers-Danlos Syndrome
Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary fro...
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what my Geneticist said...
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I am older and only heard about EDS last January. I have been spontaneously dislocating all my life. So after much badgering of my PCP I got an appointment with a Geneticist last July. Now at this point in my life I am 55 have had numerous dislocations , I have FIbro for over 20 years, and I have had multiple small bowel hernias and small bowel resections, as well as other surgeries.
The geneticist said my dislocations shouldn't hurt. I am not limber any more because I have sever osteoarthritis in my joints and degenerative arthritis in my ankles and my spine. When I was young...back in them old days I was told I had growing pains, and when I couldn't move after dance classes they just said I work too hard. When I would fall all the time because my ankles would give out (no pain then), I was clumsy. My first dislocation came at about 18 months when I was climbing on a kichen chair. The real question is do I accept it and drop it or do I push for a testing of EDS type4 ? Posted on 09/27/09, 05:09 pm |
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Those are all things that go along with it . Dont let them push it aside ! 
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i agree with onyxangel. i have both 3 and 4. the doctors refused to test me for the 4th one because i appeared normal but after tear in my shoulder that has not healed in over 7 years they finally agreed to test me an i came up with a cross of the two. so dont ignore it. my mum was like you when she was younger she's also the same age as you, they said she was double jointed an the pain was from spanish dancing. she never got tested but because eds is passed on an i have it we believe she has it as well as my gran (her mum) both can still touch the floor flat handed and bend their backs back wards as well as pop out a few joints at free will, double jointed apparently. but we dont have the right doctors here in Oz so mum see's no point in getting checked out as for my gran we wont ever know as she passed away from cancer. but please get tested, rather safe then sorry.
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onyxangel and kazzawahya,
thank you both for confirming me and supporting my need to be tested. My Grandma was always so proud of being able to flat hand the floor. I have some double joints too. Maybe I'll just send him this and he will get it. My niece has type 3 so far in her testing , she is having a very hard time keeping her hip and shoulder in. Her pain level is through the roof and she is only 12, since she has Juvenile diabetes the pain spikes her blood sugar and makes it harder to control, even with a pump.
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Is everybody getting ECHO yearly to check heart and aorta?
If not, please do so.
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noneareleft, i get an echo twice a year because of an enlarged valve an my heart is weaker. but my cardio is thinking of doing it more often just to be on the safe side of things.
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I just had Echo and stress test and heart cath, all is clear thank the Lord.
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