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.

Traduire / Traducir / Verdolmetschen / Natłumaczyć / Tulkot / переводить / 翻译

A Horse of Another Color by Zebra Girl

Hi. My name is Chris, and I’m a zebra! A lot of doctors thought I was I was horse, when they heard me hobbling in to their rooms. Some barely looked me, just heard my hoofbeats, and so treated me like a horse. “When you hear hoof-beats, expect horses, not zebras,” the saying goes. The problem for me is that I’m not a horse. I'm a ZEBRA.

When it comes to high blood pressure, the majority of sufferers have essential hypertension. Their blood pressure problems are not the result of a disease, tumor, or body abnormality. These “horses” often will benefit from changing their diet, starting to exercise, and perhaps taking medication. I’m not a horse. I'm a zebra. Many doctors heard my hoofbeats but did not notice my stripes or were confused by them and sent me on my way.

Early on, a doctor saw my stripes; he saw not a horse a 20-something with high blood pressure who was otherwise fit and slim. He heard a noise over my right kidney and was sure I had a rare, zebra disease he heard about at medical school. An ultrasound indicated this was a possibility. I then had an angiogram, but the person reading the scan said I was fine. I was supposedly a horse.

For almost ten years, my blood pressure climbed. It sat at 180/120 on seven different medications, and that was a good day! The symptoms, oh the symptoms—headaches that were agonizing and would wake me from sleep, pain in my side and back, vomiting, nausea. I had sudden bouts of rapid heartbeats and palpitations, and I could feel my pulse in my fingertips and toes.

Some doctors kept adding medications, not interested in working out why I was such a stripy looking horse, yet other doctors were understandably worried why a young slim woman had such high blood pressure. Blood tests and scans looking for tumors were clear. Another few years galloped on by. I was begging for answers, sometimes in tears, and was sent to a specialist who changed my life when he said, “Stop wishing you had a cause for your high blood pressure. You have essential hypertension; you need to accept that and move on with your life.”

He saw high blood pressure, clear blood test results, and assumed I was a “horse,” even though I had had noise over my kidney artery, uncontrollable blood pressure, was young and slim. He changed my life for the better, because I realized he was wrong, and I took back full control of my medical care, and searched for a doctor who would look, listen, and search.

A wonderful endocrinologist who heard hoof-beats, but did not see a horse, finally saw me as a puzzle that had to be solved. He and an interventional radiologist looked at scans old and new and found I had a vascular disease—fibromuscular dysplasia. I was not a horse! I was indeed a zebra.

The FMD caused renal artery stenosis—a 97 percent blockage in my right kidney artery. I was not crazy; it wasn’t in my head; I did not have essential hypertension. I was not a horse! I was a hypertension zebra.

I had angioplasty to open my renal artery, and my blood pressure dropped to almost normal! The symptoms vanished. However, I went on to have some more problems with FMD, as I have intimal FMD—the zebra version of a zebra disease, which is also more aggressive. I’ve had an aneurysm form in my renal artery, and I need a stent. Plus there is damage to smaller arteries near my kidney that can not be repaired. FMD also has been found and treated in arteries that go to my legs (iliacs) and found in my carotid artery.

Another five years galloped by, and (two kids later) my blood pressure started spiking. More and new drugs were tried without success. The symptoms returned, life became unmanageable, and to be honest, scary. Doctors had proof I was a zebra, but they were unsure how to treat me. I’m a zebra, who sometimes wishes I was just a horse.

On March 22, I had my right kidney removed. It was damaged by FMD and not able to be safely repaired. According to the surgeon, my blood pressure dropped the minute my kidney artery was clamped. She said my kidney appeared to be covered in worms—it was a pile of collateral vessels that had grown to try to get blood to my kidney—and said she had never seen anything like it. The joy of being a zebra! The surgery was a month ago now, and I'm happy to say my blood pressure has dropped dramatically. I still need medication, but now it works. I am still a zebra, will always have FMD, and need close and continued monitoring.

I am a keen advocate for the zebra disease of FMD and will speak to any doctor, nurse, or medical student I can find and remind them that hoofbeats usually mean a horse, but a quick glance, may lead to so much more. I asked my surgeon if my case can be used to teach others in medical journals, and she is keen to help. I can understand why doctors expect so see horses in their office, not zebras, but I think that there may just be a few more zebras sitting in the waiting room, wondering why they have stripes, and looking for answers. I am thankful to have a new general practice doctor who has eyes open for stripy horses.

FMD zebras, by the way, are great people. I’ve met many online and some in real life. Despite our different stories and prognosis, we share many stripes. Many of us share the journey of being called a horse for years, we know the vague look in doctors’ eyes when mention our disease, and we know the concerns of the future. We also share many laughs. Well, enough for now, this zebra is off for a gallop.

1 comment:

  1. Bravo! This was great! Well said, fellow zebra!!

    -JustJennifer ;)


FMD Chat encourages comments and discussion; however, please note that use of threatening or profane language and comments that clearly have no relation to the original post will not be tolerated.