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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Rare Disease Day - Rare Disorders Without Borders - Fibromuscular Dysplasia Around The World

In celebration of Rare Disease Day and the 2013 theme, Rare Disorders Without Borders, fibromuscular dysplasia patients and those affected by FMD around the world are sharing their stories about how FMD has impacted their lives.

Medical professionals are taught that when you hear hoof beats, think horses—not zebras. That is fine when you are a horse, but sometimes a hoof beat does belong to a zebra. I am a medical zebra twice over. In July 2004, I was diagnosed with Fibromuscular Dyplasia or, for short, FMD.

When I first looked up information on the internet on FMD; I found foot and mouth disease or things that stated that I did not have long to live. I felt very much alone.

There were moments of frustration because in a lot of cases I was the one who knew more about my disease then the medical professionals treating me. An example of this was being in the ER with a blood pressure of 230/120 with a severe headache. At the time, the last thing I wanted to do was to have to explain what was wrong with me.

There are times that I would want to hide and but I found that while my life has changed being a “zebra” has only made me stronger. For it is a matter of accepting change and realizing that it is ok for me to have moments to grief. While I have had to stop doing some things I love, I have been able to start new things.

In July of 2011, I was diagnosed with Pulmonary Arterial Hypertension thus making me a medical zebra one again.

Share your own story about how fibromuscular dysplasia has had an impact in your life. Whether you're a patient, a family member, a caregiver, or a healthcare provider, we want to hear from you!