Re: Lana: , Jen, We are here at NIH

[Guest guest]

I'd LOVE to , but I won't have a car. I plan to go at the end

of a week, so I would probably have Sat. and Sunday to get back home.

If you could come to me, it would sure be doable for at least an

evening or lunch or something. Let me know what you think, OK? I

know you are much worse than I am and deal with lots of issues with

pain and meds, so I'm not sure if you drive a lot?? I don't want to

make you feel obligated.

Love Lana

> Lana, Yippeeee! I am so glad that you and Jen and and

hopefully you,

> Meghan got in!! That's wonderful! You will only be 3 hours from me

then. Can you

> commmmme for a visit?? Pleazzzz.

>

> , I am so glad you got in too! Yay!! Are you still doing the

one at the

> Clinical Center too or am I confused again?

>

> That's wierd about Dylan's back. ,my 22 year old wonder,

has two

> unhealed vertebrae. They cause her pain a lot too.. I am always

amazed at all the

> commonalities! She also broke her femur (for no know reason). She

has not be

> diagnosed with EDS.

>

>

>

>

[Guest guest]

,

Glad to hear from you. Yes I am still going to the clinical center but not

in a study there. Just for diagnosis. My cells still aren't growing, by the

end of Aug if they still haven't grown they will do another skin biopsy in

Sept. Cindy C. talked to Dr. Francamano in my behalf and she wants to

include me in the study at Harbor City Hospital. So I'll be going to both

places.I called Dr. Francomano's office this afternoon using the number you

posted. It just answered with administrative office recording, I left a

message for Dr. Francomano, is the phone number right? 1-? I

hope to hear from her soon. Dr. McD told Cindy to tell me to call ASAP. How

are you doing? Thanks!

Love, S.

Lana: , Jen, We are here at NIH

> Lana, Yippeeee! I am so glad that you and Jen and and hopefully you,

> Meghan got in!! That's wonderful! You will only be 3 hours from me then.

Can you

> commmmme for a visit?? Pleazzzz.

>

> , I am so glad you got in too! Yay!! Are you still doing the one at

the

> Clinical Center too or am I confused again?

>

> That's wierd about Dylan's back. ,my 22 year old wonder, has two

> unhealed vertebrae. They cause her pain a lot too.. I am always amazed at

all the

> commonalities! She also broke her femur (for no know reason). She has not

be

> diagnosed with EDS.

>

>

>

>

[Guest guest]

,

Glad to hear from you. Yes I am still going to the clinical center but not

in a study there. Just for diagnosis. My cells still aren't growing, by the

end of Aug if they still haven't grown they will do another skin biopsy in

Sept. Cindy C. talked to Dr. Francamano in my behalf and she wants to

include me in the study at Harbor City Hospital. So I'll be going to both

places.I called Dr. Francomano's office this afternoon using the number you

posted. It just answered with administrative office recording, I left a

message for Dr. Francomano, is the phone number right? 1-? I

hope to hear from her soon. Dr. McD told Cindy to tell me to call ASAP. How

are you doing? Thanks!

Love, S.

Lana: , Jen, We are here at NIH

> Lana, Yippeeee! I am so glad that you and Jen and and hopefully you,

> Meghan got in!! That's wonderful! You will only be 3 hours from me then.

Can you

> commmmme for a visit?? Pleazzzz.

>

> , I am so glad you got in too! Yay!! Are you still doing the one at

the

> Clinical Center too or am I confused again?

>

> That's wierd about Dylan's back. ,my 22 year old wonder, has two

> unhealed vertebrae. They cause her pain a lot too.. I am always amazed at

all the

> commonalities! She also broke her femur (for no know reason). She has not

be

> diagnosed with EDS.

>

>

>

>