Welcome to the new members!

[Guest guest]

Hi Judith and Robin,

Welcome to the CEDA family! I'm Jo from the UK and I'm a mutant, well

that's what my surgeon affectionately calls me anyway! I have a

variant of EDS with some Marfan Syndrome factors too making me

something of a lab rat for my specialist.

Robin - I'm sorry to hear that you husband and daughter both have EDS

classical and that you have found it difficult getting help and

support from the doctors. That is a worryingly familiar story I'm

afraid. I'm sure that you will find all the support, advice and

information you need here though, it has been a real godsend to me in

recent months. Please take care and I look forward to " talking " with

you soon.

Judith - Thank you so much for being so willing to research EDS more

because of that awesome teenager! She truly is an amazing person and

inspiration to us all with her attitude, determination and

generosity. I can assure you that you're just one of the many lives

she has touched! I am sorry to hear that you have your own mobility

and medical issues. I admire you immensely for the wonderful work you

do with Helper Dogs and know how much help you have given my

wonderful friend Rhea and Hannah. Hope to talk with you more soon

too.

Take care both and know you're in my thoughts and prayers.

Love and hugs....Jo