Back from seeing Prof Bird

[Guest guest]

Hi guys,

I've just got back from my appointment from Prof Bird and I'm

completely exhausted! Gash that was a very long, tense journey due to

traffic and flooding problems. It took us ages to get there and to

find a parking space, so I was really flustered and up tight by the

time I finally got there. But I needn't have worried as Prof Bird was

very understanding and very appreciative that we were able to make it

at such short notice. (less than 24 hours!)

Anyway, to the appointment. He was very nice and incredibly thorough.

He took my medical history down, asked my entire family history then

examined me very thoroughly and even examined my parents for

hereditary signs too! He noticed things that other people haven't and

picked up on things many doctors have dismissed as not of consequence

as well. He listened, didn't patronise me and best of all put me at

ease. I never felt like I had to prove there was something wrong, he

just instantly knew and wanted to help find out what it is. He took

down an awful lot of notes, highlighting many key factors from my

exam and history and pointed out/asked about a lot of things I'd

never even considered too. I was very impressed with his attitude and

manner and have to say I was pleasantly surprised as I had fully

expected him to just gloss over my condition and dismiss me like most

other doctors have! It was quite a shock to have someone be genuinely

interested and concerned for me.

The up shot is that he believes my Mother has a basic

hypermobilty/mild EDS gene and I always being the adventurous one

took the genes and ran with them! It appears that I am a mosaic

mutation, meaning I am the first to manifest a different version of

EDS in my family - having what he described as probably a Type III

mutation with Marfaniod factors. He feels that both my skeletal and

bleeding issues can be attributed to my EDS variant and as such wants

me to be assessed by several different departments and have even more

tests done (oh joy!). So he wants me to go into the hospital in Leeds

for at least a week to have everything done at one time and have a

full, through assessment so they can get me under some sort of

control hopefully too. I'm a little freaked out at the idea but know

that it makes sense and is necessary. He says he will get me in

within 4-6 weeks, but that my upcoming shoulder surgery should not be

postponed.

All in all I feel pretty satisfied with how things went as it was

much better than I expected really. It's never nice being told you

have a mutation of an already rare condition, but having a diagnosis

and reason for everything is a big psychological help. I'm not

looking forward to my week or two of being prodded and poked by

everyone and his brother, but at least I feel I have made progress

today. It's like the first step forward have taken in many, many

years. It makes me angry to think of the years I was being denied

this help though while my GP was happy to brand me a hypochondriac.

Oh well, I guess looking back isn't going to help me now, so here's

too looking forward and hopefully making more steps towards some

management and relief at long last. I'm know I'm never going to get

better, but at least now I have a little bit of hope that someone is

willing to help me cope with this and make my quality of life with

this condition as comfortable as possible.

Thanks for all your support and good wishes, they mean an awful lot

to me and help me through these tense times. Please know that I am

incredibly grateful to you all and hope that I can show the same

support back to you too. take care and know I'm thinking of you and

always here for you.

Love and hugs.....Jo

xxx

[Guest guest]

Jo,

I am extremely happy that all went well for you at your appointment with

Prof. Bird.

Always keep smiling, even if it is upside-down the occasional day.

[Guest guest]

Jo,

I am extremely happy that all went well for you at your appointment with

Prof. Bird.

Always keep smiling, even if it is upside-down the occasional day.

[Guest guest]

Dear Jo --

What a joy to find someone like Prof Bird!!!! I am so happy for you - I know

how it feels to finally have someone like him behind you 100%.

Good luck on all your upcoming tests and will be keeping good thoughts for you

in the weeks ahead.

Here's to looking forward, too!!!!!!!!!!!!!!!

Love, Patti

Back from seeing Prof Bird

o learn more about EDS, visit our website: http://www.ceda.ca

[Guest guest]

Dear Jo --

What a joy to find someone like Prof Bird!!!! I am so happy for you - I know

how it feels to finally have someone like him behind you 100%.

Good luck on all your upcoming tests and will be keeping good thoughts for you

in the weeks ahead.

Here's to looking forward, too!!!!!!!!!!!!!!!

Love, Patti

Back from seeing Prof Bird

o learn more about EDS, visit our website: http://www.ceda.ca