JoyRe: Re: NIH/contact

[Guest guest]

Joy,

I'm so sorry that you have had that experience. Back then, during the " old "

protocol when they were in Bethesda, it was a long wait at that time, then

there were some interruptions. The lady that was the coordinator when I first

contacted them , BUFFY, was the only surly person there! When I asked her if

they

thought I had it, she responded, " They wouldn't invite you to come up here if

they didn't "

After Dr. F. moved the study from the genetics institute to the NIA (National

Institute on Aging) there was a HUGE lull. She was sooo upset about it all.

New prototcols were written and all but because some deaths in other studies at

Hopkins (NON NIH related studies), which is where it first moved to,

EVERY study was put on hold and scrutinized by the government. Meanwhile, about

the time that the male doctor (I " ve forgotten his name) contacted you, Dr. F

thought that things were going to be settled soon but many many times things

happened with paperwork and then it would be one more thing they had to do. That

doctor was hired but because he was there for over a year without EVER seeing

one patient, he left(can you blame him) the state. He was very nice but no

one could do anything about it all.

Dr. F. then got what she thought was approval and I saw her for a quick

visit at HOpkins(again I got to be the first one seen ---good luck for me)

but

then after a few patients -including in Texas... it was stopped , more

paperwork , moved into their beautiful renovated floor at Harbor and it began !!

I think your timing was just unfortunately off through no ones fault. I'm so

sorry. I hope you will call or email them. Do you have any relatives in

Richmond? If you came would you get down her to see them because I would love

to

meet you .

Please don't give up. I would certainly feel bitter about it too and find it

hard not to take it personally since I'm overly sensitive. Dr. F. would feel

very badly if she knew you had been through all that. When it was in Bethesda,

not everyone even saw her and she was unaware of those kinds of things even

happening. The wait was long then too.

Anyway, please email or call them. Clair told me Tuesday that they have hired

a program coodinator and she will be starting in September so that will make

things easier for them and for potential patients and communication.

Take care,

In a message dated 8/19/2004 9:37:56 AM Eastern Daylight Time,

jsedgley@... writes:

I am going to try and contact them about the study, but I am a

little doubtful about hearing back. Maybe I am just too cynical.

I've been that way a lot lately as I continue to develop weird

things that are all EDS related.

I first contacted them in 1997 or 98 and was put on " the list " .

I received some information and have recontacted them about once or

twice a year since then. In 2001 I got a phone call from a male dr

who was working on the study - he talked to me for a really long

time, was very informative and took down lots of information from

me -- supposedly. And that's the last I ever heard. I've let them

know I am happy to pay travel expenses and that my dad and brother

are also affected and they are also willing to travel, etc.

Maybe now there's someone working on it that will do something. But

after 6 or 7 years of contacting them and hearing that they're

interested, I am not too optimistic.

I want to help -- especially since my brother is in far worse shape

than I am and he's never been checked out for anything since he has

no health insurance. I'd love for him to at least find out some

things that might help him or others with EDS.

Joy