fibromuscular dysplasia support, education & advocacy
Fibromuscular dysplasia (FMD) is a complex disease that is most commonly seen in women, with systemic presentation that may include stenosis, aneurysm or dissection most commonly in the renal and carotid arteries, migraine-like headaches, dizziness, and tinnitus or a swooshing sound in the ears. Low bone density, joint laxity and degenerative disease in the spine also have been linked to the disease. FMD is considered a rare disease; however, it is also believed to be underdiagnosed.

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FMD - An Invisible Disease No Longer by AfternoonNapper

I'm young and, for all appearances, healthy. Such is the problem with being a fibromuscular dysplasia patient. No one can see arterial stenosis from the outside — at least not without diagnostic imaging, and while those cool "x-ray" sunglasses were a hit with young boys hoping to see through ladies' blouses, they haven't really done much for healthcare. 

Having an "invisible" disease makes it is easy for doctors, friends, family members, and general members of the public to forget that just because we look well doesn't mean we feel well. Any disease without any exterior physical manifestation suffers this same form of discrimination, as non-patients often believe that if a disease can not be seen, it must not exist, or that if a disease can not be seen, it must surely not be as bad as the patient says it is. Those with invisible diseases consequently are prone to feeling neglected, harassed, or misunderstood when the disease interferes with life's plans — fatigue results in an early end to an evening out, pain prevents one from inviting over company, nausea forces quiet isolation. Patients with invisible diseases are acutely aware of how their disease impacts themselves and others even though others aren't aware of the same. The invisible disease patient may choose to further remove him or herself from public activity because never making plans to go out just seems easier than once again experiencing feelings of being a downer or a burden. 

Helping non-patients to "see" FMD and recognize its effects is the goal of FMD Chat's latest project. The "What Is FMD?" poster — custom designed exclusively for FMD Chat — draws on publicly reported data about the prevalence of FMD presentations including renal artery involvement, cartoid artery dissection, dizziness, headache, and tinnitus. Dr. Bruce Gray, D.O., of Greenville Hospital System University Medical Center and Chief Operating Officer of the American Board of Vascular Medicine reviewed the poster and his statement as follows is featured: "FMD is typically asymptomatic but can develop symptoms as depicted in the diagram. In years past, the diagnosis was often confirmed on biopsy at the time of surgical repair. As imaging studies have improved (CTA, MRA, Duplex ultrasound, contrast arteriography) the diagnosis is often inferred from these studies without biopsy. Treatment has also evolved from open surgery to the use of less invasive catheter-based procedures, such as balloon angioplasty. However, most patients today acquire the diagnosis via an imaging study and can be treated with medication. This strategy can minimize symptoms, but does not 'cure' the disease."

Those interested in obtaining a copy of the "What Is FMD?" poster may order one online from FMD Chat's Cafepress site or contact FMD Chat directly

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