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soficrow
Unregistered User
(12/3/02 12:35 pm)
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Hello - thank you - we need an organization
Thank you for being here.

I am 50 - was diagnosed with right lateral renal FMD in 1990 - preceded by 20 years of episodic agony, many trips to the emergency ward. It became routine - gynecology, negative tests, assurances that all was well. Later, GI was added to the mix. I have been mis-diagnosed with everything from gall bladder problems to Crohn's, GERD, you name it.

I was fairly symptom free for about 5 years after my angioplasty, but now it's escalating and I'm getting pretty scared.

I have only just figured out that this disease does not get diagnosed until it's life threatening (if then), and that the follow up care sucks - mainly because there are no alternatives to surgical diagnosis and treatment.

If no one's on it, I want to start an FMD organization to advocate and lobby. Now. If someone has already started - I can help.

I have a background in marketing and communications, as well as government policy. And I'm ready to rumble.

Thanks,
Sofi
soficrow@hotmail.com

soficrow
Unregistered User
(12/3/02 12:40 pm)
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PS. I'm from Canada.
PS. I'm from Canada.

[And I'm having trouble posting and navigating here.]
But thank you, thank you, thank you!!!

All the members
Unregistered User
(12/3/02 1:07 pm)
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Welcome to your site to
Thank, "you" for being here.This group has to grow in order to perfect a voice that people in high places can hear.Thankyou from all of us here at FMFfaqs.com

Dogwalkerprodigynet
Unregistered User
(12/4/02 8:02 am)
Reply
Organization
We are currently trying to get organized. Join our
online chat Dec. 6 at 9pm EST.

Celeste
Unregistered User
(12/20/02 12:23 am)
Reply
organization
Discussions continue with a needed brake over the holidays.

Next Chat as you can see in the site, is for January 10, 2003. Prepare to bring a good New Year's story after an hour's discussion of the organization's progress and where we are heading.

Have a happy and wonderful holiday.

Celeste

bambijo2003
Unregistered User
(4/4/05 8:54 pm)
Reply
FMD
I'm trying to find the soficrow who wrote Population Controll Bioweapon? Medical Accident? What is Fibromuscular Dysplasia (FMD)? Are you this person? If so do you have any more info.? FMD was found near my right kindey 4 yrs. ago when the were trying to find out why I have high blood pressure. They did an angoplasty. It worked for a while but now my BP is back up. I hope I don't have a stroke before I can get it done again. Is there anyway I can hepl to bring awarness to this disease? I am scared. If you or anyone has any info.l please e-mail me at www.bambijo2003@yahoo.com. Thanks for any help!!! God Bless us all...

Rick
Unregistered User
(4/23/05 9:20 pm)
Reply
Looking For Sofi
GO TO: fibromusculardysplasia.net

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