By Sara - UK on Friday, June 02, 2000 - 01:46 pm:

Posted by Sara - UK on May 23, 2000 at 09:16:01:

It was brilliant!! There was Prof. Rodney Graheme, Rheumy, Prof Howard Bird, Rheumy, Hon Prof Mike Pope Dermatologist and genetecist, Dr Nigel Burrows, Dermatologist and Research, Mr Andreas Barabas, Vascular Surgeon, so I was certainly in great company! They all gave talks on their specialities and were accessible to everyone there which was great. I'm seeing Mike Pope myself 2nd June, and Howard Bird is sending me an appointment to see him for long-term management (appointment arranged at the conference) and it is thought that I have a cross over to Osteogenesis Imperfecta. I've also recently developed a heart problem, which they don't think is a mitral valve prolapse, but the Bundle of His (bundle of nerves that the electrical impluse passes along to make the heart beat) is made of connective tissue and in a few rare cases this can be of such poor quality that this can cause the abnormalitiy I am experiencing and Howard Bird's arranging for me to see a cariologist that has experience in this as they are rare to find! If this is the case, I'll need a pace maker, but WOW it was great that someone knew straight off what I was talking about!! I strongly urge EVERYONE with EDS to have a regular echocardiogram - this could save your life literally!! Anyway anyone wishing to know further details, please feel free to e-mail me and I'll reply more fully. Good Luck to everyone and take care.x

By Jude on Friday, June 02, 2000 - 01:47 pm:

Posted by Jude on May 23, 2000 at 11:40:03:

In Reply to: EDS National Conference posted by Sara - UK on May 23, 2000 at 09:16:01:

Well done Sara, you sound like you had a great time. Congratulations I am really pleased for you. It's great to know there is light at the end of the tunnel isn't it? Go for it!

By Sara - UK on Friday, June 02, 2000 - 01:47 pm:

Posted by Sara - UK on May 25, 2000 at 07:31:07:

In Reply to: Re: EDS National Conference posted by Jude on May 23, 2000 at 11:40:03:

Hey Jude
Life's far too short, and you only get one shot at it and I'm making real sure that I make mine count!!
Keep smilin' and be happy xx

By Jude on Friday, June 02, 2000 - 01:49 pm:

Posted by Jude on May 21, 2000 at 01:57:37:

Sara, did you go to the conference yesterday? When you're all settled again I'd love to hear all about it. Does anyone know of the procedure to try & get an appointment with Prof Graham? I have never really had a proper diagnosis, only general observation from my osteopath; please see my entry in "pain pain go away" for my 'introductry speech'!! I am so fed up now, I just want to get a proper diagnosis and treatment/advice to make life a little easier. Also would like any info on the next conference in September. Cheers everyone, I feel like i'm starting to get to know you all now, keep up the good work.

By Sara on Friday, June 02, 2000 - 01:49 pm:

Posted by Sara on May 23, 2000 at 09:13:27:

In Reply to: Sara -re conference posted by Jude on May 21, 2000 at 01:57:37:

It was brilliant!! There was Prof. Rodney Graheme, Rheum, Prof Howard Bird, Rheumy, Hon Prof Mike Pope Dermatologist and genetecist, Dr Nigel Burrows, Dermatologist and Research, Mr Andreas Barabas, Vascular Surgeon, so I was certainly in great company! They all gave talks on their specialities and were accessible to everyone there which was great. I'm seeing Mike Pope myself 2nd June, and Howard Bird is sending me an appointment to see him for long-term management and it is thought that I have a cross over to Osteogenesis Imperfecta. I've also recently developed a heart problem, which they don't think is a mitral valve prolapse, but the Bundle of His (bundle of nerve that the electrical impluse passes along to make the heart beat) is made of connective tissue and in a few rare cases this can be of such poor quality that this can cause the abnormalitiy I am experiencing and Howard Bird's arranging for me to see a cariologist that has experience in this as they are rare to find! If this is the case, I'll nedd a pace maker, but WOW it was great that someone knew straight off what I was talking about. I strongly urge EVERYONE with EDS to have a regular echocardiogram - this could save your life literally!! Anyway anyone wishing to know further details, please feel free to e-mail me and I'll reply more fully. Good Luck Jude and take care.x