I'm in the NIH Study Dec 13-14

[Guest guest]

Just spoke to Dr. McDonnell at NIH. I am scheduled to do the NIH EDS study

Dec 13-14. I plan on flying out either Friday or Saturday so I can visit

friends and family in the area on the weekend, and then go to the study

Mon/Tue, returning home Wednesday so I can be back in school on Thursday.

One of my classes ends Dec 7, but the other one runs until the 23rd, so I

don't have much break between classes. We start up again January 4. I'll

probably have to bring the homework to do at the hospital, but I am sure

there will be some down-time between tests during which I can work class

stuff.

If anyone else is going to be there around the same time, let me know if you

want to meet up. I am going to try to get in touch with Kiersten Sistek

while I am there and I also have some family in the DC area.

-Barb

[Guest guest]

Yea!!!! Congrats Barb! That's great!

Cindylouwho

I'm in the NIH Study Dec 13-14

Just spoke to Dr. McDonnell at NIH. I am scheduled to do the NIH EDS study

Dec 13-14. I plan on flying out either Friday or Saturday so I can visit

friends and family in the area on the weekend, and then go to the study

Mon/Tue, returning home Wednesday so I can be back in school on Thursday.

One of my classes ends Dec 7, but the other one runs until the 23rd, so I

don't have much break between classes. We start up again January 4. I'll

probably have to bring the homework to do at the hospital, but I am sure

there will be some down-time between tests during which I can work class

stuff.

If anyone else is going to be there around the same time, let me know if you

want to meet up. I am going to try to get in touch with Kiersten Sistek

while I am there and I also have some family in the DC area.

-Barb

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

[Guest guest]

Yea!!!! Congrats Barb! That's great!

Cindylouwho

I'm in the NIH Study Dec 13-14

Just spoke to Dr. McDonnell at NIH. I am scheduled to do the NIH EDS study

Dec 13-14. I plan on flying out either Friday or Saturday so I can visit

friends and family in the area on the weekend, and then go to the study

Mon/Tue, returning home Wednesday so I can be back in school on Thursday.

One of my classes ends Dec 7, but the other one runs until the 23rd, so I

don't have much break between classes. We start up again January 4. I'll

probably have to bring the homework to do at the hospital, but I am sure

there will be some down-time between tests during which I can work class

stuff.

If anyone else is going to be there around the same time, let me know if you

want to meet up. I am going to try to get in touch with Kiersten Sistek

while I am there and I also have some family in the DC area.

-Barb

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

[Guest guest]

Congratulations!!! I hope you find out more and that this will be a start to

great care!!!

HUGGLES,

Grace

EDS, It's a Life Thing

http://www.ehlersdanlos.ca/whateds.htm

I'm in the NIH Study Dec 13-14

Just spoke to Dr. McDonnell at NIH. I am scheduled to do the NIH EDS study

Dec 13-14. I plan on flying out either Friday or Saturday so I can visit

friends and family in the area on the weekend, and then go to the study

Mon/Tue, returning home Wednesday so I can be back in school on Thursday.

One of my classes ends Dec 7, but the other one runs until the 23rd, so I

don't have much break between classes. We start up again January 4. I'll

probably have to bring the homework to do at the hospital, but I am sure

there will be some down-time between tests during which I can work class

stuff.

If anyone else is going to be there around the same time, let me know if you

want to meet up. I am going to try to get in touch with Kiersten Sistek

while I am there and I also have some family in the DC area.

-Barb

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

[Guest guest]

Congratulations!!! I hope you find out more and that this will be a start to

great care!!!

HUGGLES,

Grace

EDS, It's a Life Thing

http://www.ehlersdanlos.ca/whateds.htm

I'm in the NIH Study Dec 13-14

Just spoke to Dr. McDonnell at NIH. I am scheduled to do the NIH EDS study

Dec 13-14. I plan on flying out either Friday or Saturday so I can visit

friends and family in the area on the weekend, and then go to the study

Mon/Tue, returning home Wednesday so I can be back in school on Thursday.

One of my classes ends Dec 7, but the other one runs until the 23rd, so I

don't have much break between classes. We start up again January 4. I'll

probably have to bring the homework to do at the hospital, but I am sure

there will be some down-time between tests during which I can work class

stuff.

If anyone else is going to be there around the same time, let me know if you

want to meet up. I am going to try to get in touch with Kiersten Sistek

while I am there and I also have some family in the DC area.

-Barb

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

[Guest guest]

Congratulations!!! I hope you find out more and that this will be a start to

great care!!!

HUGGLES,

Grace

EDS, It's a Life Thing

http://www.ehlersdanlos.ca/whateds.htm

I'm in the NIH Study Dec 13-14

Just spoke to Dr. McDonnell at NIH. I am scheduled to do the NIH EDS study

Dec 13-14. I plan on flying out either Friday or Saturday so I can visit

friends and family in the area on the weekend, and then go to the study

Mon/Tue, returning home Wednesday so I can be back in school on Thursday.

One of my classes ends Dec 7, but the other one runs until the 23rd, so I

don't have much break between classes. We start up again January 4. I'll

probably have to bring the homework to do at the hospital, but I am sure

there will be some down-time between tests during which I can work class

stuff.

If anyone else is going to be there around the same time, let me know if you

want to meet up. I am going to try to get in touch with Kiersten Sistek

while I am there and I also have some family in the DC area.

-Barb

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

[Guest guest]

Hi Bernie,

I think this will or SHOULD help ALL of our doctors, IF they will

read the reports and IF they will trust the study and US! I know

I'm lucky to have a doctor with an open mind, and if they recommend

something, I'm sure he'll follow it, as he is sometimes at a loss as

to what to do. I've not found any rheumy to be effective, and he

said that if what I needed was pain control, etc. he would try to

handle that for me. But what I think he doesn't get, is how EDS can

affect EVERY joint and organ in our body!! As good as he is, I

wonder if he sometimes feels I'm exagerating. He's never said this

to me, and hasn't denied me anything to this point, but at the same

time, he doesn't really know HOW to be proactive with this (if there

is such a thing). For example, I've never had a heart echo - and

haven't asked for one, as I know he would have asked why I thought

it was necessary, and until the conference this year, I wouldn't

have had an answer. Does this make sense to anyone else?

Love Lana

I'm sitting here wondering if this will really change the doctors we

> have to deal with locally, and particularly their ability to

acknowledge

> this syndrome. I AM CERTAIN BEYOND A DOUBT THAT EACH OF US SHOULD

BE

> TAKING OUR FAMILY DOCTOR WITH US SO THEY CAN NO LONGER CLAIM LACK

OF

> KNOWING HEDS and that doc should be obliged to go through 1/2 the

tests.

> Bernie

[Guest guest]

Hi Bernie,

I think this will or SHOULD help ALL of our doctors, IF they will

read the reports and IF they will trust the study and US! I know

I'm lucky to have a doctor with an open mind, and if they recommend

something, I'm sure he'll follow it, as he is sometimes at a loss as

to what to do. I've not found any rheumy to be effective, and he

said that if what I needed was pain control, etc. he would try to

handle that for me. But what I think he doesn't get, is how EDS can

affect EVERY joint and organ in our body!! As good as he is, I

wonder if he sometimes feels I'm exagerating. He's never said this

to me, and hasn't denied me anything to this point, but at the same

time, he doesn't really know HOW to be proactive with this (if there

is such a thing). For example, I've never had a heart echo - and

haven't asked for one, as I know he would have asked why I thought

it was necessary, and until the conference this year, I wouldn't

have had an answer. Does this make sense to anyone else?

Love Lana

I'm sitting here wondering if this will really change the doctors we

> have to deal with locally, and particularly their ability to

acknowledge

> this syndrome. I AM CERTAIN BEYOND A DOUBT THAT EACH OF US SHOULD

BE

> TAKING OUR FAMILY DOCTOR WITH US SO THEY CAN NO LONGER CLAIM LACK

OF

> KNOWING HEDS and that doc should be obliged to go through 1/2 the

tests.

> Bernie

[Guest guest]

Autumn, someone just posted something on the list about charity

flights that you can contact. It was in the last 3-4 days.

Love Lana

> MY WHOLE EMEDIATE FAMILY HAS HYPERMOBILE TYPE WITH VASCULAR

SYMPTOMS AS WELL

> WITH A NEG BIOPSY ON MY SON AND ME. WE HAVE BEEN E-MAILED BACK

BUT I KNOW

> WE CANNOT AFFORD THE TRAVEL.

>

>

>

> THEY WANT TO KNOW IF WE WANT TO BE PART OF THE STUDY. DOES ANYONE

KNOW WHERE

> YOU CAN GET ASSISTANCE FOR THIS? I AM IN MAINE.

>

>

>

> aUTUMN

>

>

>

> _____

>

> From: Barbara [mailto:kdavis@d...]

> Sent: Monday, August 23, 2004 3:04 PM

> To: ceda

> Subject: I'm in the NIH Study Dec 13-14

>

>

>

> Just spoke to Dr. McDonnell at NIH. I am scheduled to do the NIH

EDS study

> Dec 13-14. I plan on flying out either Friday or Saturday so I

can visit

> friends and family in the area on the weekend, and then go to the

study

> Mon/Tue, returning home Wednesday so I can be back in school on

Thursday.

>

> One of my classes ends Dec 7, but the other one runs until the

23rd, so I

> don't have much break between classes. We start up again January

4. I'll

> probably have to bring the homework to do at the hospital, but I

am sure

> there will be some down-time between tests during which I can work

class

> stuff.

>

> If anyone else is going to be there around the same time, let me

know if you

> want to meet up. I am going to try to get in touch with Kiersten

Sistek

> while I am there and I also have some family in the DC area.

>

> -Barb

>

>

>

> To learn more about EDS, visit our website:

http://www.ehlersdanlos.ca

>

>

>

>

>

>

>

[Guest guest]

Autumn, someone just posted something on the list about charity

flights that you can contact. It was in the last 3-4 days.

Love Lana

> MY WHOLE EMEDIATE FAMILY HAS HYPERMOBILE TYPE WITH VASCULAR

SYMPTOMS AS WELL

> WITH A NEG BIOPSY ON MY SON AND ME. WE HAVE BEEN E-MAILED BACK

BUT I KNOW

> WE CANNOT AFFORD THE TRAVEL.

>

>

>

> THEY WANT TO KNOW IF WE WANT TO BE PART OF THE STUDY. DOES ANYONE

KNOW WHERE

> YOU CAN GET ASSISTANCE FOR THIS? I AM IN MAINE.

>

>

>

> aUTUMN

>

>

>

> _____

>

> From: Barbara [mailto:kdavis@d...]

> Sent: Monday, August 23, 2004 3:04 PM

> To: ceda

> Subject: I'm in the NIH Study Dec 13-14

>

>

>

> Just spoke to Dr. McDonnell at NIH. I am scheduled to do the NIH

EDS study

> Dec 13-14. I plan on flying out either Friday or Saturday so I

can visit

> friends and family in the area on the weekend, and then go to the

study

> Mon/Tue, returning home Wednesday so I can be back in school on

Thursday.

>

> One of my classes ends Dec 7, but the other one runs until the

23rd, so I

> don't have much break between classes. We start up again January

4. I'll

> probably have to bring the homework to do at the hospital, but I

am sure

> there will be some down-time between tests during which I can work

class

> stuff.

>

> If anyone else is going to be there around the same time, let me

know if you

> want to meet up. I am going to try to get in touch with Kiersten

Sistek

> while I am there and I also have some family in the DC area.

>

> -Barb

>

>

>

> To learn more about EDS, visit our website:

http://www.ehlersdanlos.ca

>

>

>

>

>

>

>

[Guest guest]

Autumn, I found it - it's called US Flights info and it's in the

files section of this list.

Love Lana

> MY WHOLE EMEDIATE FAMILY HAS HYPERMOBILE TYPE WITH VASCULAR

SYMPTOMS AS WELL

> WITH A NEG BIOPSY ON MY SON AND ME. WE HAVE BEEN E-MAILED BACK

BUT I KNOW

> WE CANNOT AFFORD THE TRAVEL.

>

>

>

> THEY WANT TO KNOW IF WE WANT TO BE PART OF THE STUDY. DOES ANYONE

KNOW WHERE

> YOU CAN GET ASSISTANCE FOR THIS? I AM IN MAINE.

>

>

>

> aUTUMN

>

>

>

> _____

>

> From: Barbara [mailto:kdavis@d...]

> Sent: Monday, August 23, 2004 3:04 PM

> To: ceda

> Subject: I'm in the NIH Study Dec 13-14

>

>

>

> Just spoke to Dr. McDonnell at NIH. I am scheduled to do the NIH

EDS study

> Dec 13-14. I plan on flying out either Friday or Saturday so I

can visit

> friends and family in the area on the weekend, and then go to the

study

> Mon/Tue, returning home Wednesday so I can be back in school on

Thursday.

>

> One of my classes ends Dec 7, but the other one runs until the

23rd, so I

> don't have much break between classes. We start up again January

4. I'll

> probably have to bring the homework to do at the hospital, but I

am sure

> there will be some down-time between tests during which I can work

class

> stuff.

>

> If anyone else is going to be there around the same time, let me

know if you

> want to meet up. I am going to try to get in touch with Kiersten

Sistek

> while I am there and I also have some family in the DC area.

>

> -Barb

>

>

>

> To learn more about EDS, visit our website:

http://www.ehlersdanlos.ca

>

>

>

>

>

>

>

[Guest guest]

TY WILL CHECK INTO IT THIS IS A ONCE IN A LIFETIME THING.

aUTUMN

_____

From: buckysmom2000

Sent: Tuesday, August 24, 2004 12:20 AM

To: ceda

Subject: Re: I'm in the NIH Study Dec 13-14

Autumn, I found it - it's called US Flights info and it's in the

files section of this list.

Love Lana

> MY WHOLE EMEDIATE FAMILY HAS HYPERMOBILE TYPE WITH VASCULAR

SYMPTOMS AS WELL

> WITH A NEG BIOPSY ON MY SON AND ME. WE HAVE BEEN E-MAILED BACK

BUT I KNOW

> WE CANNOT AFFORD THE TRAVEL.

>

>

>

> THEY WANT TO KNOW IF WE WANT TO BE PART OF THE STUDY. DOES ANYONE

KNOW WHERE

> YOU CAN GET ASSISTANCE FOR THIS? I AM IN MAINE.

>

>

>

> aUTUMN

>

>

>

> _____

>

> From: Barbara [mailto:kdavis@d...]

> Sent: Monday, August 23, 2004 3:04 PM

> To: ceda

> Subject: I'm in the NIH Study Dec 13-14

>

>

>

> Just spoke to Dr. McDonnell at NIH. I am scheduled to do the NIH

EDS study

> Dec 13-14. I plan on flying out either Friday or Saturday so I

can visit

> friends and family in the area on the weekend, and then go to the

study

> Mon/Tue, returning home Wednesday so I can be back in school on

Thursday.

>

> One of my classes ends Dec 7, but the other one runs until the

23rd, so I

> don't have much break between classes. We start up again January

4. I'll

> probably have to bring the homework to do at the hospital, but I

am sure

> there will be some down-time between tests during which I can work

class

> stuff.

>

> If anyone else is going to be there around the same time, let me

know if you

> want to meet up. I am going to try to get in touch with Kiersten

Sistek

> while I am there and I also have some family in the DC area.

>

> -Barb

>

>

>

> To learn more about EDS, visit our website:

http://www.ehlersdanlos.ca

>

>

>

>

>

>

>

[Guest guest]

Lana: Yes. With comprehensive testing and a very good report to our

local doctor it should help.....if there is the expertise in follow-up.

Bernie

Re: I'm in the NIH Study Dec 13-14

Hi Bernie,

I think this will or SHOULD help ALL of our doctors, IF they will

read the reports and IF they will trust the study and US! I know

I'm lucky to have a doctor with an open mind, and if they recommend

something, I'm sure he'll follow it, as he is sometimes at a loss as

to what to do. I've not found any rheumy to be effective, and he

said that if what I needed was pain control, etc. he would try to

handle that for me. But what I think he doesn't get, is how EDS can

affect EVERY joint and organ in our body!! As good as he is, I

wonder if he sometimes feels I'm exagerating. He's never said this

to me, and hasn't denied me anything to this point, but at the same

time, he doesn't really know HOW to be proactive with this (if there

is such a thing). For example, I've never had a heart echo - and

haven't asked for one, as I know he would have asked why I thought

it was necessary, and until the conference this year, I wouldn't

have had an answer. Does this make sense to anyone else?

Love Lana

[Guest guest]

In a message dated 8/23/2004 7:56:39 PM Pacific Standard Time,

bfhalkett@... writes:

This syndrome really does

make us pretty weird. Most people hate this stuff and would totally run

for miles rather than spend money to fly there, for 2 days of it no

less.

My first thought was that I'd save enough on my co-pays for all those tests

that I could afford the airfare! My second thought was spending ONLY two days

getting all that & not having to run to 20 different doctors, offices &

appointments would also save a heck of a lot of time & searching for parking

spaces . & I have applied, waiting to hear. I'd put off my hip

operation

if needed...especially if the tests would give the hip doctor additional info

to work from!

Liza

[Guest guest]

Congrats Barb, I'm in too.I just don't have a date yet, they will call this

week!

Sincerely, S.

I'm in the NIH Study Dec 13-14

> Just spoke to Dr. McDonnell at NIH. I am scheduled to do the NIH EDS

study

> Dec 13-14. I plan on flying out either Friday or Saturday so I can visit

> friends and family in the area on the weekend, and then go to the study

> Mon/Tue, returning home Wednesday so I can be back in school on Thursday.

>

> One of my classes ends Dec 7, but the other one runs until the 23rd, so I

> don't have much break between classes. We start up again January 4. I'll

> probably have to bring the homework to do at the hospital, but I am sure

> there will be some down-time between tests during which I can work class

> stuff.

>

> If anyone else is going to be there around the same time, let me know if

you

> want to meet up. I am going to try to get in touch with Kiersten Sistek

> while I am there and I also have some family in the DC area.

>

> -Barb

>

>

>

>

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

>

[Guest guest]

Hi Patti,

I would love to go with you, however, I am looking at dates in December

cause of my college schedule and my kids school schedules, I am hoping to

get both of them in as well. And my husband.

We have hypermobile type with vascular symptoms ( my daughter and I) my

husband and son seem to be all hypermobile.

Where in Maine are you?

Hugs,

Autumn

_____

From: Patti Melcher

Sent: Tuesday, August 24, 2004 11:39 PM

To: ceda

Subject: Re: I'm in the NIH Study Dec 13-14

Hi Autumn --

My name is Patti and I am from Maine also. I hope you can go - I am waiting

to hear from them to get the dates I'll be going. Hey, it would be great if

it worked out that we could hook up and go together?? (I have vascular EDS)

Patti

I'm in the NIH Study Dec 13-14

Just spoke to Dr. McDonnell at NIH. I am scheduled to do the NIH EDS

study

Dec 13-14. I plan on flying out either Friday or Saturday so I can visit

friends and family in the area on the weekend, and then go to the study

Mon/Tue, returning home Wednesday so I can be back in school on Thursday.

One of my classes ends Dec 7, but the other one runs until the 23rd, so I

don't have much break between classes. We start up again January 4. I'll

probably have to bring the homework to do at the hospital, but I am sure

there will be some down-time between tests during which I can work class

stuff.

If anyone else is going to be there around the same time, let me know if

you

want to meet up. I am going to try to get in touch with Kiersten Sistek

while I am there and I also have some family in the DC area.

-Barb

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

[Guest guest]

Hi Autumn --

I live on Southport - right outside of Boothbay Harbor. I don't know yet when

I'll be scheduled.

What are you taking in college? Do you go full-time?

Take care and hope to talk to you soon.

Love, Patti

I'm in the NIH Study Dec 13-14

Just spoke to Dr. McDonnell at NIH. I am scheduled to do the NIH EDS

study

Dec 13-14. I plan on flying out either Friday or Saturday so I can visit

friends and family in the area on the weekend, and then go to the study

Mon/Tue, returning home Wednesday so I can be back in school on Thursday.

One of my classes ends Dec 7, but the other one runs until the 23rd, so I

don't have much break between classes. We start up again January 4. I'll

probably have to bring the homework to do at the hospital, but I am sure

there will be some down-time between tests during which I can work class

stuff.

If anyone else is going to be there around the same time, let me know if

you

want to meet up. I am going to try to get in touch with Kiersten Sistek

while I am there and I also have some family in the DC area.

-Barb

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