By Sara - UK on Monday, June 05, 2000 - 05:37 pm:

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 Monday, June 05, 2000 - 05:37 pm:

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 Monday, June 05, 2000 - 05:37 pm:

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