Celeste
Unregistered User
(12/21/02 1:00 am)
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Letter to NOWC submitted by Jocee and their response
The following was sent on 12/18/02 to the National Counsel of Women's Organizations by me:
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I am writing to you, not really sure if this is where to submit a topic for the Women's Health Issues page or not, but hoping that this reaches the appropriate person.
There is a little known disease of the arteries called Fibromuscular Dysplasia (FMD). Medical professionals term it as "rare", however, I believe classifying it as rare is a serious mistake.
The following is some basic information about FMD. It is my hope that you will consider doing an article about FMD since it affects women 3 times as often as men.
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Do You Know What FMD Is?
FMD, Fibro Muscular Dysplasia, is a disease of blood vessels that causes
narrowing (stenosis) and ballooning (aneurysms). It is different to atherosclerosis, or "hardening of the arteries". There is no inflammation of arteries, which distinguishes it from
vasculitis, where inflammation is present.
Five pathological subtypes of FMD have been described. By far the most common is "medial
fibroplasia", which usually produces alternate narrowing and ballooning, the classic "string of beads" appearance on angiography.
FMD, like cancer, can continue to spread throughout the body and affect several arteries in one patient. Involvement of the kidney arteries is most commonly recognized, usually because of the development of high blood pressure. The arteries to the brain and the legs are also commonly affected. Less common is the involvement of the arteries to the bowel, the heart, the mesenteric (stomach), and the and arm .
FMD affects women three times as often as men. The most common age at diagnosis is between 30 and 50 years, however, any age or gender may be affected. More than one member of a family may be affected.
Disease of the kidney arteries accounts for between 1-in-50 and 1-in-20 cases of high blood
pressure seen at high blood pressure clinics, and for up to 1-in-5 children with high blood
pressure. FMD is the most common kidney artery disease causing high blood pressure in patients younger than 40.
Estimates of how common FMD is depend upon the way it is looked for. FMD has been found in 1-in-50 to 1-in-8 people with normal blood pressure, and approximately 1-in-10 patients undergoing investigation for underlying causes of high blood pressure. FMD may, therefore, be more prevalent than previously appreciated, and almost certainly remains undiagnosed in less severely affected patients.
There is no known cure for FMD, only the ability to treat the symptoms and react to the problems as they arise.
If you would like to learn more about FMD and connect with people from around the country and even from around the world who have FMD, please visit these websites:
www.fmdq.com and
groups.yahoo.com/group/Fi..._Dysplasia
Consult your doctor for further information about Fibro Muscular Dysplasia
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Thank you for your time and consideration. If you would like to learn more, please visit the sites or contact me directly.
Sincerely,
Jocee Vreeland
(information of personal nature deleted by C)
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And this was the response received 12/20/02:
Dear Jocee,
Thanks for you e-mail. I think that this would be a better fit for one of our health organizations. I will recommend some of them to you, but would encourage you to also visit our website at www.womensorganizations.org and take a look at our membership list. You may want to contact: Society for Women'sd Health Research at (202)496-5007 and the National Women's Health Network at (202)347-1140. I think this is a very worthwhile project and you should get some positive responses.
Best wishes,
Rebecca Menso
Assistant to the Chair
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