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Fibromuscular Dysphasia

By Jean Guggenheimer


Like mold behind the wall, or termites under the floorboards, fibromuscular dysplasia, -- more commonly known as FMD -- is not a condition you are likely to know that you have. That is, until a stroke strikes. For the most part, this condition has almost no symptoms and there is no cure—or even treatment.


You may be wondering then, why I volunteered to write about this topic. For one thing, I have FMD. Also it was the cover story in the March/April issue of Stroke Connection, a publication of the American Stroke Association (ASA). The big FMD news is that the ASA recently has recognized FMD as a cause of stroke, thanks to the continuing efforts of Pam Mace, RN, Chairperson of FMDSA and an FMD Patient. So you can see why that cover story caught my attention big time. For me FMD was discovered only after I had my stroke, which occurred just a little more than five years ago.



Let me provide you with some important information before I tell you my FMD story, which is short and not so sweet. Here is what the experts have to say about it:


Writing in the latest issue of the FMDSA newsletter, Dr Jeffrey W. Olin, Professor of Medicine (Cardiology), and Director, Vascular Medicine at Mount Sinai School of Medicine, New York, states: “It is difficult to determine how common FMD is in the general population. This is due to several reasons. Individuals with mild disease are often asymptomatic and so the disease may go undetected.” Indeed, he says, “Most studies examining the prevalence of FMD have looked at specific patient populations in whom individuals may have already suffered from serious consequences of the disease. Incidence rates have been quoted at 0.5-1.1% although this may not be indicative of how many people actually have FMD. “


And here is the statement that I think has the most significance:


“Many people with this disease do not have symptoms or findings on a physical examination. The signs and/or symptoms that a person with FMD may experience depend on the arteries affected and the degree of narrowing within them.” It can be detected with imaging methods such as

CT scan, MRI, Ultrasound, and Angiogram. In the most common forms of FMD, a characteristic “string of beads” appearance is seen in the affected artery. This appearance is due to changes in the cellular tissue of the artery wall that causes the arteries to alternatively become narrow and dilated. A less common, but more aggressive form of FMD may cause areas of vessel narrowing only without the “string of beads” appearance.


“The two most common areas affected by FMD are the renal arteries (arteries carrying blood to the kidneys) and the carotid arteries (arteries carrying blood to the brain). Any pain or clinical sign related to FMD typically comes from the organ that is supplied by that artery. For example, FMD in the kidney arteries may cause high blood pressure. Progression of the disease can also result in ischemic renal atrophy, where some of the kidney’s tissue dies due to lack of oxygen, and in rare circumstances, kidney failure. 


Nonetheless, Olin acknowledges that “many physicians consider fibromuscular dysplasia to be rare, but it is not that uncommon: it is often overlooked or misdiagnosed. I find this contradictory. Since there are practically no symptoms, there is little reason for anyone to have it checked out for a diagnosis.



In my own case, the FMD diagnosis was accidental – uncovered in a follow up arteriogram a year after my stroke occurred. This procedure was done to look at the positioning and effectiveness of a stent that had been put in my carotid artery to keep it open after it dissected and caused my stroke. The imaging done by Dr. Peter Kim Nelson, a pioneering interventional radiologist at New York University in New York City, showed that my arteries are beaded and that I have FMD. He then suggested to my neurologist that FMD was likely a factor in my stroke. I should tell you, however, that the initial diagnosis of the cause of my stroke was trauma, since I had been hit in the neck by a tennis ball—hit really hard.


The stroke struck several months later after the dissection of my carotid artery. The docs now believe that the cause was a combination of two factors – the weak, beaded carotid arteries due to FMD, and the trauma from the force of tennis ball that likely caused the carotid dissection, possibly due to the artery weakness associated with FMD. The docs also told me that a carotid dissection could simply be spontaneous with no known cause. So, my question is this: would I have had a stroke even if I didn’t have FMD? Who knows? I do believe that getting hit in the neck with a tennis ball got the ball rolling (please pardon the pun).


So, it’s no wonder that the magazine story caught my eye. After I read it, I immediately sent an email to Pam Mace and she called me a few days later. This is a topic she is passionate about. I am less so, because if people do not have symptoms, -- there are hardly any --- they have no reason to check it out until it’s too late. Granted, this is just my opinion and she was less than sanguine about my side of our conversation. That is not to say that FMD should not be considered as a risk factor for stroke. Or that advocacy for awareness and research is not necessary. For example, Renal Life magazine carried an article about a 5-year-old who was diagnosed with FMD when, during a routine health check at school, a nurse noticed unusually high blood pressure for a child so young. The FMD diagnosis was confirmed a few weeks after the child’s trip to an emergency room.


So, just what is my point? There are many risk factors we can control to prevent stroke – such as not smoking or eating salty foods that increase blood pressure, as well as foods that increase cholesterol. And so on and so forth. FMD should not be ruled out as a risk factor. It is, however, just one of those factors that cannot be controlled.


Nevertheless, all that being said, I do highly recommend finding out more about FMD at You will learn a lot more than this tidbit here and may even develop a strong interest in this topic, as I have. A little education goes a long way. And, who knows? It could save a life.


Copyright © November 2007

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