Re: we're back from the NIH Connective Tissue Study in Baltimore(long)

[Guest guest]

Hi Laxity, No you don't need insurance. They would like to see you 3 times in 5

years, but you don't have to and you can drop out at any time, and you can turn

down any test if you don't want to take it. But all tests are non invasive. I

have all the info they sent me so far with the forms we will be signing. If you

want to contact me at home, I'll pass along all the info and phone #'s, and

e-mails.

The only thing is you asked about getting care there, They do research, all

suggestions they have for care are sent to your Dr. They did treat for an

infection, but the EDS care is not done there. If they know of something that

could help you, they'll be sure to let you know. So, if you want to contact me,

I'll send you what I have.

Cindylouwho

Re: we're back from the NIH Connective Tissue Study in

Baltimore(long)

Are you able to get care there without insurance?

[Guest guest]

Hi Laxity, No you don't need insurance. They would like to see you 3 times in 5

years, but you don't have to and you can drop out at any time, and you can turn

down any test if you don't want to take it. But all tests are non invasive. I

have all the info they sent me so far with the forms we will be signing. If you

want to contact me at home, I'll pass along all the info and phone #'s, and

e-mails.

The only thing is you asked about getting care there, They do research, all

suggestions they have for care are sent to your Dr. They did treat for an

infection, but the EDS care is not done there. If they know of something that

could help you, they'll be sure to let you know. So, if you want to contact me,

I'll send you what I have.

Cindylouwho

Re: we're back from the NIH Connective Tissue Study in

Baltimore(long)

Are you able to get care there without insurance?

[Guest guest]

, I have kept this email to remind myself to look for the study at NIH

on-line. I can't find it. I can send you the consent form sent to me by them. It

is several pages long and has allot of info. We are going in Aug.

Cindylouwho

Re: we're back from the NIH Connective Tissue Study in

Baltimore(long)

Is there a website or something with information about the study?

I'd like to learn more about it to see if it would be worth the cost

for me to pay to fly to Baltimore 3 times in 5 years.

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

[Guest guest]

, I have kept this email to remind myself to look for the study at NIH

on-line. I can't find it. I can send you the consent form sent to me by them. It

is several pages long and has allot of info. We are going in Aug.

Cindylouwho

Re: we're back from the NIH Connective Tissue Study in

Baltimore(long)

Is there a website or something with information about the study?

I'd like to learn more about it to see if it would be worth the cost

for me to pay to fly to Baltimore 3 times in 5 years.

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

[Guest guest]

Cindy, that would be great. Please send it to me at gimpygal @

hotmail.com (remove the spaces). Thanks a bunch!!

> , I have kept this email to remind myself to look for the

study at NIH

> on-line. I can't find it. I can send you the consent form sent to

me by them. It is several pages long and has allot of info. We are

going in Aug.

> Cindylouwho

[Guest guest]

Cindy, that would be great. Please send it to me at gimpygal @

hotmail.com (remove the spaces). Thanks a bunch!!

> , I have kept this email to remind myself to look for the

study at NIH

> on-line. I can't find it. I can send you the consent form sent to

me by them. It is several pages long and has allot of info. We are

going in Aug.

> Cindylouwho

[Guest guest]

Cindy, is this the article???

http://www.the-aps.org/publications/tphys/2003html/Feb03/anncmnts.htm

Love Lana

> , I have kept this email to remind myself to look for the

study at NIH

> on-line. I can't find it.