A Guest Blog
by: Sarah E. Kucharski
FMD CHAT, Founder
Many fibromuscular dysplasia patients look, for all appearances, healthy. No one can see arterial stenosis from the outside. 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” fibromuscular dysplasia 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.