The Journey We Share by JustJennifer

This is my own story, but my intent is not so much to tell my own story as it is to drive home the point that, despite fibromuscular dysplasia being a life-altering and potentially deadly disease of the arteries, those of us who have it are often faced with the fear and frustration of having a disease that is researched far too little. As a result, it is commonplace for patients of this disease to have medical emergencies that their doctors are unable to recognize or treat. We hope that by raising awareness, we can reduce the number of people being left to suffer without answers or help.

Three months ago, I was blissfully unaware that I had fibromuscular dysplasia of both carotid arteries. In fact, like most people, I had never heard of this disease and likely would have uttered what we are all so weary of hearing: “Oh, you mean fibroMYALGIA?!”

I was on a plane heading home from a visit with my fiancé. It was a typical flight, and as the plane descended, I began to mentally rattle off all the things I had to do the minute I landed. Actually, I only tried to process those thoughts, but something that felt like the drunkenness of a sleeping pill rapidly set in. I could not control the urge to sleep that came on fast and strong, along with a nauseating blurriness in both my vision and my thoughts. As quickly as I felt these sensations hit me, I was asleep.

I was awakened by the bump of the landing, but feeling those same “drunk” sensations in full force, I was more embarrassed than frightened. How was I going to explain that I could not wake up enough to exit this plane? I have a foggy memory of stumbling over my bags in the terminal while irritated passengers had to step around me.

My goal now was to make it to the nearest chair, where I immediately collapsed, spilling my purse and luggage on the airport floor. I was asleep again, until airport security woke me to ask if I needed a paramedic. I denied needing a paramedic, attempted to walk, and landed face down on the floor of the airport vomiting uncontrollably.

I only have flashes of memory after that: a moment in an ambulance, a moment in the emergency room with a team yelling that they needed my consent to start a lumbar puncture, a moment of clarity during which I called my fiancé and children to say something was wrong, and then the moment that I woke up—the next day—in a regular hospital room, wearing a gown someone else put on me, and no memory of ever being checked into that room. That was when panic truly set in.

A team of specialists ran into my room proudly announcing that they had discovered my problem, (a “discovery” I later learned was a misdiagnosis), “You have a dissected internal carotid artery very close to your brain, and you are VERY lucky to still be here!” They added that if this ripped any further, I could have a massive stroke and die before they could save me.

It wasn’t until undergoing an angiogram two weeks later, (despite one doctor’s warning that this was too risky of a procedure), that I learned the artery had not dissected but was “diseased” with FMD. This was causing the beginning of an “aneurysmal bulge,” and a similar bulge was forming on the other carotid artery as well.

I am at high risk for both strokes and aneurysms and will have to be monitored every four months, but it was a shock to learn that this may or may not have even had anything to do with what happened to me at the airport! If discovering FMD was accidental, then we are back to square one with no answers as to what in the world happened to me at the airport, and I must clarify this to any reader who might conclude that those symptoms are necessarily attributable to FMD. The jury is still out on that.

The jury, in fact, is still out on many things related to FMD, and that is the reason for this narrative. After meeting a number of fellow “FMDers,” the frustration common to most of us is the frightening lack of widespread knowledge in the medical field about this disease.

Hop into an FMD chat room, and you will hear countless stories from exasperated people who have been told by one doctor that we cheated death, only to be told nothing is wrong with us by another—sometimes even when these doctors both viewed the very same scans and lab work! Many of us have been sent home from emergency rooms despite stroke-like symptoms, often by doctors who admit lack of knowledge about FMD, and most of us have experienced stories as frightening as mine (or much worse), only to go about our lives with few answers and the constant question of whether we are perfectly fine or in serious danger.

We share many symptoms in common, but no “cookie-cutter” prototype defines us. FMD clinics have only recently been established, but despite these being few, far between, costly, and giving no promise of definitive answers, many of us are forced to travel to them because too often NOBODY in our local towns can treat us.

If I would dare to be the voice for all of us, I would cry out to the medical field to please hear us. Please research this disease more fully. Please educate our local doctors as to how to identify this disease so that they will at least know to look for it before sending us home sick and afraid. Please clarify facts from opinions so we aren’t taking pills we don’t need or eliminating activities we cherish but have been told we can’t risk doing. Let’s get to the bottom of what causes and what best treats this disease so that we can once and for all understand what is happening and proactively seek help instead of suffering needlessly.

Three months ago, I had symptoms that I could not explain, but did not know I had this disease. Now, I have a new family of friends who also have it. Each time another joins our group, it confirms that we have more questions than answers. On behalf of all of us, we hope each person who learns that they also have FMD will not feel as alone in the journey as we did; and maybe together, by making our voices heard, awareness can be raised to give us all the help we are seeking.