NIH

August 19, 2004

I have been an inpatient at NIH as well as an outpatient. I have also had

surgery at the Clinical Center in Bethesda. When I was in the Endocrine

ward (one of the best rated in the world) there were people from all over

the world. The woman in the next room was from Brazil, my roomate was from

Nevada and the person across the hall was from one of the Carribean Islands.

For those who could not afford even the airfair, transportation was provided

as long as they met the protocol for the study that was being done. Most

people had such interesting and bizarre medical problems! My roommate was

an OR nurse who was fainting during surgery. She and her husband were

fighting for custody of their children during a messy divorce. He called

the hospital and told them she was on drugs. They suspended her from her

job without pay. After examination at Scripps Clinic in CA it was

discovered she had a tumor onthe isles of langerhorns(spelling)which was

causing extreme hypoglycemia which cause the fainting. Because she was an

unusual case and out of work, everything was paid for by NIH.

I just had a run of the mill occult parathyroid tumor and thyroid cancer.

The tumor was nowhere to be found during surgery by the best endocrine

surgeon in Atlanta. I was accepted at NIH for a 2 week inpatient testing

procedure. BTW, The Clinical Center in Bethesda has NO nurses aides or LPN.

You are assigned an RN as your case manager and a substitute when she/he is

not there. They are incredibly knowledgeable. They handle everything for

you from bedpans to scheduling. Tests that are run daily come in as

computer printouts so you can see the results. My husband came up to drive

me home. He was provided a room in a local house (almost all the housing

near the center is in private homes) owned by Sylvester Stallone\'s aunt.

There were pictures of Stallone everywhere.

I was sent home after two weeks and contacted a month later when all the

testing results were in. Since they were able to locate the tumor in the

sliver of thyroid I had left, I returned for surgery.

I had my original surgery in Atlanta and was allowed to stay overnight and

sent home the next day. When I had the followup surgery in Bethesda, I was

there two weeks. When I pleaded with the doctor to send me home,he said,

\ " What\'s your hurry?\ " Ah! the difference between a medical facility run

with insurance driving the medicine and one that functions without

insurnace.

Ehrn I entered the EDS genome study at NIH, I stayed in a local hotel that

had a shuttle to the Center. I paid a resonable amount, but even that was

covered for one of my busmates who was recruited for a clinical study on

breast cancer. They paid for her to fly from NYC and all her meals and

expenses since she was a social worker on a very small income. So the money

issue can be negotiated. They will not turn anyone away if you have the

disease, symptoms or disorder they are studying.

My NIH study has ended and this is a start up of a new one.

To all of you who are hesitating about contacting Dr Mc Connell and Dr

Francomano, you are losing a golden opportunity to contribute to the future

knowledge of collagen disorders as well as getting the best care possible.

Judy/Atlanta

The Ehlers Danlos National Foundation

http://www.ednf.org'>www.ednf.org

August 24, 2004

Mark, you already have your info in. They still have 40 plus spots for EDS. You

don't have to worry. They are just overwhelmed as Drs, trying to do this all

without a secretary. They will get back to you. You'd have to see how much they

do in a day. Dr. Nazli was with us at 11:30 PM and back in the AM. They see

patients all day and fit these calls in when they can. Both these lady Docs are

moms too. I don't know how they are managing it all but they are. They already

contacted you, now you have to just sit and wait for a date. I know it's hard,

but CEDA has swamped them (I warned them LOL.) Give them a couple days. I'm

sure you'll hear soon.

Cindylouwho

NIH

That's the only thing that worries me, actually -- I mean, personally.

I hope they don't run out of spaces...

> Unfortunately, they are also getting FAR more EDS participants than

> Marfans

> and Sticklers. They really need about 100 for each of the different

> disorders

To learn more about EDS, visit our website: http://www.ehlersdanlos.ca

August 24, 2004