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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The Journey Continues by JustJennifer

Only three months have passed since I was diagnosed with fibromuscular dysplasia of both internal carotid arteries. When I first wrote of the events that led to this discovery in my previous blog post, “The Journey We Share,” I was still recovering and somewhat dazed by the news. Now, just one month later, I have had more of an opportunity to research information and to network with others who also have FMD.

I have come to learn that this disease affects us all in unique ways, but some generalizations are also evident. These generalizations are supported not only by medical research but by listening to the daily struggles of  -growing FMD “family.”

Those with renal FMD make up the majority of us, and (although this is not what I have), I recognize their stories and their fears. These are the ones with ongoing surges in blood pressure that seem to indicate that their disease might be worsening or a crisis could be imminent. They often speak of flank pain that comes and goes. Many have lost kidney function, or worse – many have lost kidneys and now live in fear of what may happen if FMD claims the remaining kidney. Although hypertension is a fairly common concern world-wide, a blood pressure spike in someone with renal FMD could precede kidney failure; so constant blood pressure monitoring is critical. Many of them are on several blood pressure medications and still end up hospitalized with life-threatening hypertension, so monitoring blood pressure becomes almost a life-altering obsession. It HAS to be.

Most of us with FMD in the carotid arteries do not have the extreme hypertension of those with renal FMD, in fact, some of us have dangerously LOW blood pressure; however, we have our own set of symptoms and warnings. We are warned not to ride roller coasters, paint ceilings, lift weights, or do anything that could jolt our necks. We often hear a range of noises in our ears, have bouts of abnormal vision, and have splitting headaches that make us wonder whether we are experiencing an aneurysm or stroke for which we carry high risk. Many of us feel we have been sentenced with ticking time bombs in our heads but share stories of feeling foolish for running to the emergency room only to be sent home by doctors saying we are simply experiencing common migraines. Yet many of these emergency room doctors who tell us this admit that they are not familiar with FMD and often do not even see it on scans when scans conducted by previous specialists show dangerous abnormalities.

Clearly, we patients have different or seemingly opposite symptoms, depending on where our FMD is located, and the disease can be present in other arteries as well – each with a whole list of other unique symptoms. Most of us have been told we are likely to have it in more than one spot; but few of us have the money or resources to search the entire body for other diseased areas. Since many doctors are still uninformed about FMD, most of us feel we would do well to successfully preserve the arteries known to be diseased. We continue to hope for research and medical training to increase.

I once heard that one of the most stressful jobs in the world is that of an air traffic controller. To an outsider, it may appear that they sit in a cushy chair, sip coffee, and simply watch a screen. The stress is not seen on the outside, but inside the traffic controllers know that while they stare into an uneventful screen, one slip-up could result in the loss of lives. They may stare at nothingness for months on end, but if a crash is imminent, they and they alone must spot the danger and correct it.

Perhaps that is a perfect metaphor to describe how we feel. We look so healthy on the outside, but we are warned of signs to watch for like blips on an otherwise uneventful screen. Despite our symptoms, we may manage lives that are rich and full, or one of those “blips” may suddenly herald the crash that destroys us.

And when one of those “blips” sounds the alarm, we pray we will fall into the hands of a doctor who can recognize an airplane, and maybe even save the passenger.

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