Comments | ehlersdanlos: Um... hi everyone!

serenity151979 in ehlersdanlos

Um... hi everyone!

Jan 24, 2010 15:03

Just found this place, joined up straight away. I'm a 30 year old female from Northern Ireland and I've just been diagnosed with EDS hypermobility by Professor Grahame. I also have CFS and Fibromyalgia, amongst other heath issues. I've always known there was something 'not quite right' going on, my childhood was spent going to doctors with pain ( Read more... )

Comments 6

belle_marmotte January 24 2010, 23:35:31 UTC

Hi there I also have ME/CFS and ED hypermobility type. I was also plagued with pains dismissed as growing pains, from the age of 2. I constantly fell over as a child and tripped constantly as I got older. I never found out why until last year when I was diagnosed with persistent foetal femoral anteversion, which basically means due to the crazy stretchy collagen, my hips never went into the adult position leaving my legs in a twisted position and my feet pointing inwards when I walk. It took a random encounter with a physiotherapist when I was 40 to figure this out, despite my parents dragging me to every doctor they could think of during my childhood.

I have to wear orthotic devices in my shoes to stop my extreme pronation but I've been told I am developing arthritis in my hips and there is nothing really they can do about it.

I'm glad you've got a diagnosis, but I find virtually no doctor I've encountered really understands the issues with hypermobility. None of mine seem to take it seriously. I'm also in the UK.

poodlepants January 25 2010, 05:15:53 UTC

Is there not a hypermobility clinic in the UK? I remember hearing about it.

serenity151979 January 25 2010, 10:54:04 UTC

Have you not been referred to one of the hypermobility clinics in mainland UK? The reason I had trouble getting there was that I'm in N.I. and they're reluctant to fund that, so I paid to go to London to see Prof. Grahame myself. But it would be worth going to your GP to ask to see him in London, or Prof. Bird in Leeds if that's closer to you.

beatlemania78 January 25 2010, 19:23:43 UTC

I think there are two HMS/EDS clinics in the UK...Prof Grahame's in London and Prof. Bird's in Leeds. I wish we had something like this in Canada.

sweepergrl February 3 2010, 17:56:59 UTC

Welcome to the group. I think I'd go nuts without the occasional help from everyone here. I live in the middle of the US, and the only people I've ever met face to face with EDS are my daughter and my brother, so it helps having other perspectives. Good luck getting into the clinic.

anonymous February 28 2012, 12:58:21 UTC

Hi my name is Mary my daughter was told five or six years ago that she had hypermobility by a rheumatologist, she is now 19 years old and in unie. I have said to my GP since my daughter was about 6 years old that there was something wrong but she really never listened. She has had so many medical problems over the years and now is showing a lot more in the past 18 months. She suffers from very bad headaches every day,stomach problems,bruising,cant sleep or eat,hearing problems,joint and back pains. Her hands give her so much pain when she writes or use the lap top that her hands and fingers freeze and locks.And now from christmas her eyes have got alot worse.She always had sore and very dry eyes, but now was told six weeks ago she has wet macular degeneration.Two weeks ago when we went back to the macular clinic it was leaking again and she was given the Lucentis injection. They dont know if its going to work or not as she is so young and with having connective tissue disorder. We seen genetics a year ago and he said its not ( ... )