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.

"I am Deb B. I live in the foothills of Adelaide, South Australia. I have Fibromuscular Dysplasia. Up until my diagnosis and first treatment in 2007, I was really sick, unable to function basically. My once organised life was in shambles. The symptoms were many, and I was often hospitialized for my extremely high blood pressure. Medication wasn't working, my vision was poor, my headaches on going; I could barely walk at times and was dropping weight dramatically. I knew something was very wrong and so did every doctor who looked at me.

Adelaide, South Australia
Strangely all tests showed no cause for concerns. 2007 definitely was the year I became grateful for technology. Redoing scans I had had previously on more advanced equipment revealed the state of my vascular bed. It was a train wreck. The disease was taking its toll. I had kidney shrinkage with a blockage to my right renal artery at almost 100 percent. My left renal artery was at 58 percent. Arteries to other organs were compromised, including an aneurysm to the brain with other inter cranial artery weaknesses. 

I have had several procedures to help blood flow and three stents for the aneurysm and surrounding weakened arteries. Thankfully my headaches disappeared, my vision improved, and my blood pressure dropped, but I'm not out of the woods. I have good days and bad days—thankfully more good than bad. It has been challenging allowing medical professionals to take care of me knowing that FMD was not familiar or even heard of among them. I do have fantastic doctors with a good understanding now, but it took many years to find them. 

No awareness was the problem with FMD diagnosis, and only by a chance chain of events did I get one. My hope is that for future patients a diagnosis will be quick—before damage or death occur. I have several special strings of beads."

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!