NIH/All members of CEDA-a phone number to call

[Guest guest]

Hi Everyone,

I was going to write to everyone when I got home tonight from Balt. and seing

my s Hopkins doc. who is Dr. Francomano's old partner there at NIH. We

were so tired though and I'm finally getting around to it. Cindy beat me to it

I see which is great! I hope you don't mind if I add my 2 cents or rather 2

dollars!

Dr. F and I were hoping to have lunch today but I got out too late from my

appt. and her schedule was too busy by that point for us to visit together. We

did have a nice visit on the phone though and are hoping for my next trip up

to see each other.

One thing she had told me soon after she arrived home after the conference

was how she had met so many wonderful people and was so sorry that she had to

rush out soon after her presentation. She goes at the end of July each summer

up to Bar Harbor for a course. She was so sorry that she was unable to speak

with more people there who wanted to talk with her.

I told her today that there were people , members of the old study and new

people , that were having a hard time figuring out who to contact, having

people call them back and how to get in. She said to give you all Dr. Mc

Donnell's phone number. She is one of the fellows (an M.D. with or getting

specialized

training in a specific field). They have hired a program coordinator who will

start in Sept but until then, she said to have you call

1-. Clair Francomano said any emails she receives she would just

forward on to Dr. McD so it seems it is best to just call her directly.

I asked about how long before they could expect to hear something back from

them and she said it should only be in a couple of days. If not, tell you all

to call again. I know their offices are not in the same building with the unit

where the study is physically located. Sometimes you will have to leave a

message. I know when I was there, both fellows and sometimes Clair, too,

followed

and/or took me along with the unit nurse who is so very sweet to whereever I

needed to be. That was probably because this was the first time they were

doing everything and wanted to be sure that things went ok and were set up right

and everyone knew what to do. Now, however, they should have more time in their

offices and may be easier to reach.

I have spent a lot of time working with NIH and I can honestly say that every

single person I have come in contact with (and I was an inpatient there last

year for a week in Bethesda) have just been exordinary people.

If you are early in the process of finding out about EDS, have some very

unusual problems associated with it or have lots of questions about what is

going

on with yourself, this is definately the place to go and you will learn so

much so fast. If you are receiving good care where you are and/or there are not

alot of problems , issues or questions, you may not receive a whole lot except

for validation which is so important and at times, is all we need... and could

need very BADLY! Also, the good feeling that comes with knowing you are

helping to contribute to learning more about this horrible condition is plenty

of

reason to make the trip. All of those things may very well be enough and are

more than enough reason to become a part of the study. The more patients they

see, the more likely they are of finding some help at least for our kids or

grandkids.

Ok, I've rambled to long but get me going on NIH and Clair Francomano, and I

can't stop. If I can't help anyone in any way, please let me know. I only wish

I lived closer so I take advantage of all of the facilities and resources at

NIH,,, especially at the Clinical Center in Bethesda where the protocol

started. ONce in the program, it is often easy to be able to then use their

other

resources like their pain clinic which is fabulous!

Sorry for being long winded!