Hi Everyone,I hope you are all happy and pain free, or at the very least, a little pain-less! I was so shocked this morning when I opened up my email. I have been awarded with this Community Leader Award for my EDS Blog. I actually burst into tears. I am an emotional wreck at the best of times, but I felt so proud. As many of you already know, I have been contacted by so many wonderful people who just needed to share their stories and not feel so alone with EDS. I just want to say a 'HUGE THANK YOU' to all of you, for your strength, at times your prayers and for the information that I have learnt from you. In turn, I get to share all of this with my son, so he grows up with the strength of knowledge and without a moment of uncertainty. For all of this, the words 'thank you' aren't enough, but......thank you!
Love Rowena X
P.S: Tristan's Hospital visit is on September 10th (we have had 5 cancellations) so fingers crossed we get there this time!
Hi there.
ReplyDeleteMy name is Matt. I have EDS.
First of all, congratulations!. That's pretty awesome stuff winning that award for this Blog!
I found you here as I was searching the world wide web for information regarding EDS in pregnancy.
Anyhoo, here’s why I’m writing:
When I was five years old I was diagnosed with a rare condition called Osteogenesis Imperfecta (O.I. for short). The nick name for it is ‘Brittle Bones Disease’. I found out a little over a month ago that the doctor who diagnosed me got it wrong. I have now been diagnosed with type one Ehlers Danlos Syndrome.
It all came about because my ex-partner and I are expecting a child (Yep I said ‘ex’ partner. Long story…). We were put on to the high risk department at Wellington Hospital because there are concerns when it comes to children being born with O.I. Well, after looking over my history, the geneticists discovered that I had more dislocations in my life than breaks. So, they brought me in, looked me over and said, “You have Ehlers Danlos Syndrome.”
To prove themselves right I had tests to measure bone density and stuff like that and they were right.
So, after living 30 add years thinking I had one thing, I now have another! Hahah! (I can laugh about it now!)
The doctors were a little worried about the baby and to an extent still are but we’re hoping for the best.
So, that’s me. I’ll fill you in with a few more of my life details sometime: Employment issues, pain etc…
Matty
Hi Matty,
ReplyDeleteThank you for your comment. Oh my goodness, that is madness that you have had all of that happen and it was not even the right diagnosis!!! Well welcome to EDS all the same. I was really worried about my baby too, but he has turned out to be just such an amazing kid and such an amazing part of my life. Let me know how everything goes with your baby and you of course. Take care.
Rowena
Hey there.
ReplyDeleteThanks for getting back to me. I'll definitely let you know how it all goes.
In the meantime, here's how I put my EDS to good use: http://www.youtube.com/watch?v=E8kak_pbgIk
Cheers,
Matty
Hi Matty,
ReplyDeleteYou are amazing!!! That was soooo funny I am so putting you on my Blog!
Take care and I look forward to hearing from you soon!
Rowena