It's Official per NIH - I'm One of You Welcome - P.S.

[Guest guest]

Our Dearest Mike:

I can't say I'm going to jump for joy & say, " Welcome to our club! " , but I

would guess you've always known, along with all of us that have EDS, that have

come to know you. But hearing it " officially " does often put it all in a

different perspective. If I may be so bold, please just give yourself some time

to

accept it, deal with the diagnosis & understand what it will mean to you.

~~~~~~~~~~~~~

Fortunately though, you have all of the tools to deal with it, your own

talents, already having shown Darlene how to help you with your shoulder & a

built in support team..........all of us!!! Gosh, how much luckier could a

guy get? LOL

~~~~~~~~~~~~~

Seriously though, I'm sure you know that we'll all " be here " for you, just as

you have been, for all of us. As, you & your lovely sweetheart Darlene, in

whom I've also found a wonderful new friend, (it really was tough lounging out

by the pool down in Florida while Mike was working, wasn't it Darlene? But

hey......... someone had to do it!) have both given, so selflessly of

yourselves, over the past several months. And in so doing, you have touched so

many

peoples lives & provided so much comfort, support, education & hope. I & I'm

quite sure, all of us that have been fortunate enough to have been " touched " by

you both, have been " positively " charged/changed, forever. Thank you, thank

you, thank you. Hang in there, we're all in this together.

Love you & thank you again for everything,

P.S. I am also so pleased that both you & Dr. McDonnel have put some time

away for you to work with her too! She will surely benefit, as have we all &

she surely is going to need all of the energy she can get, with all of us on our

way there!

In a message dated 8/26/2004 7:26:49 AM Eastern Daylight Time, mike@...

writes:

Don't have all the study test results back yet and they couldn't do

a couple of them, like the MRI, because their equipment is down.

But, based on the physical exam and medical history questions, Nazli

confirmed with Clair yesterday afternoon that my " diagnosis of EDS

is confirmed. "

Knees hyperextend to 30 degrees; elbows don't hyperextend at all.

Definitely have stretchy skin, easy bruising and the cigarette-paper

scarring patterns.

I think the biggest shock I had during the exam was finding out that

my right shoulder (the one with all the chronic pain for all the

years) is CONSTANTLY subluxing. It never fully dislocates but is

totally unstable. I had no idea.

I will put out a separate post later about some of the other aspects

of my being here in Baltimore.