By Jude on Monday, June 05, 2000 - 05:30 pm:

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 Monday, June 05, 2000 - 05:30 pm:

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

By Jude on Monday, June 05, 2000 - 05:31 pm:

Well done Sara, I'm really pleased for you. Isn't it nice to know there is light at the end of the tunnel and people want to help. Go for it!