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soficrow
Unregistered User
(12/5/02 12:07 pm)
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Getting attention: FMD is important
Numbers are important – to politicians, and the general public – numbers give people the reason they need to start listening.

There may be 1,064,288,800 people with FMD in the world – over 1.5 BILLION cases of FMD!

This means there are 1,022,428,800 more people with FMD than HIV/AIDS. …And it means that FMD is a much, much bigger problem than AIDS.

FMD should be one of the highest medical priorities in the world. The United Nations, World Health Organization, and all the world’s governments should be working to find new diagnostic techniques, better treatments, and a cure.

But they are not. No one knows about FMD. We need to get the message out: FMD is important – to everyone!

Is this figure accurate? Are there really over 1.5 Billion cases of FMD in the world? Where does that number come from? – It’s based on the rate of reported cases of FMD in adults in the US: 1.7%. This incidence rate of 1.7% was found in two separate articles, which are referenced below.

It is important that the FMD incidence rate of 1.7% is based on reported cases, not just estimates. This statistic tells us several things: 0.6% of the adult US population is diagnosed with FMD by angiography; 1.1% of the adult US population is diagnosed with FMD in the autopsy; and the total reported incidence rate of FMD in adults is 1.7%.

This means that out of 4,906,800 cases of FMD reported in the US, over 3 million people with FMD will die before they are diagnosed. We all know how difficult it is to recognize and diagnose FMD – which means the actual incidence rate is far, far higher. But we won’t go there.

These numbers are astounding when you consider that FMD is unknown, and classified in many countries as a rare disease.

We need to get governments, health organizations and everyone to make FMD a priority. We need better diagnostic techniques, more treatment options, and a cure.

The only way to get people to pay attention is to prove FMD is important. The way to do that is with the numbers.

Thanks,
Lanie/sofi

***************************************************************
The FMD incidence rate is stated as follows: “Reported figures (of FMD) in adults range between 0.6% by angiography and 1.1% at autopsy.” Title: “Case report of fibromuscular dysplasia presenting as stroke in a 16-year-old boy.” Source: Medline. PMID: 10334397 [PubMed - indexed for MEDLINE] Found at: www.ncbi.nlm.nih.gov/htbi...d=99265566

The FMD incidence rate is cited as follows: “Frequency: In the US: The reported incidence of FMD in adults is 0.6% via angiography and 1.1% via autopsy.” Title: “Fibromuscular Dysplasia (Carotid Artery).” Source: eMedicine Journal, March 22 2002, Volume 3, Number 3. Found at: www.emedicine.com/NEURO/topic432.htm

Also note, the rate is based only on reports of FMD in adults; and does NOT include figures for youth, children and infants.

*** There are estimated to be 534,037 FMD cases in Canada. (Compared to 49,800 estimated cases of HIV/AIDS.)

Celeste
Unregistered User
(12/18/02 1:42 pm)
Reply
Information proposal - organizational notes
I would like to propose to you the following.Comments and planning thoughts are requested

1. That we contact The National Council of Women's Organizations (NCWO) regarding FMD. Why? Researchers contend that this is primarily a women's health issue (I know, children and men have it to, but go with me on this)

2. In the Health area of the site, look at the partnership contacts they have, all of which are FILLED with powerful organizers and lobbyists, etc....many of whom are women in the 28-50 age group and might have been diagnosed with FMD or may be later diagnosed.



Alliance for Aging Research
American Association of Health Education
American College of Nurse-Midwives
American College of Nurse Practitioners
American College of Obstetricians and Gynecologists
American Diabetes Association
American Foundation for Urologic Disease
American Heart Association
American Medical Women's Association
American Menopause Foundation
American Psychiatric Foundation
American Psychological Association
American Society on Aging
Arthritis Foundation
Association of Junior Leagues International
Association of Reproductive Health Professionals
Association of Women's Health, Obstetric and Neonatal Nurses
Business and Professional Women USA
Endocrine Society
Families for Depression Awareness
General Federation of Women's Clubs
HADASSAH
Hormone Foundation
Jacob's Institute of Women's Health
National Alliance for Care Giving
National Alliance of Breast Cancer Organizations
National Asian Women's Health Organization
National Association for Continence
National Association for Women's Health
National Association of Commissions for Women
National Association of Minority Political Families
National Association of Minority Political Women, USA
National Association of Nurse Practitioners in Women's Health
National Black Nurses Association
National Council of Women's Organizations
National Council on Aging
National Education Association Health Information Network
National Family Caregivers Association
National Hispanic Council on Aging
National Hispanic Medical Association
National Medical Association
National Osteoporosis Foundation
National Women's Health Resource Center
North American Menopause Society
Older Adult Consumer Mental Health Alliance
Ovarian Cancer National Alliance
OWL, the Voice of Midlife and Older Women
Simon Foundation for Continence
Society for Women's Health Research
Susan G. Komen Breast Cancer Foundation
WomenHeart: The National Coalition for Women with Heart Disease
Women's Research & Education Institute
Y-Me National Breast Cancer Organization
YWCA of The U.S.A.




soficrow
Unregistered User
(12/18/02 4:11 pm)
Reply
stats
Celeste - the emedicine reference is not available by this link because the FMD topic is 'under review' - the other link is good again tho. Re: ref to 1.7% reported incidence.

It looks like I didn't post the other piece here - will look for it on the other site and pull it to the top again.

Celeste
Unregistered User
(12/19/02 2:43 am)
Reply
Stats
Cant wait. I wonder if these are not confused with the stats post mortum, they are closed. Cant wait to see those!

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