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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Facing FMD with Friends by WVPeaches

each day when I awake
I give thanks for each breath I take
this disease helps me appreciate
great and small blessings I anticipate

Fibromuscular dysplasia can be a frightening disease. When I first was diagnosed in the winter of 2009, I had never heard of it nor had my family, friends and most doctors. I was fortunate to have an excellent group of specialists to diagnose and provide information about carotid FMD. My sister flew in from Maryland and together with my then-husband, stayed with me throughout the angiogram procedure. We laughed, cried and held hands—not even knowing enough to be very frightened about the diagnosis.

Today I am much more informed, thanks in great part to the FMD Chat group that I found. Patients share everything about their personal FMD experiences as well as personal fears, achievements and family issues. We have discovered that we share a lot of similar symptoms and seemingly associated conditions such as: tinnitus, whooshing, severe neck pain, migraine, high blood pressure, fibromyalgia, deteriative disc disease, odd vibrating sensations (typically in upper thigh, buttocks etc.) and so forth. These are all denied by the medical practitioners as being related, but so many of us suffer from these that we know there is some correlation with the FMD.

Having a place to go to share our experiences, is like a haven for each of us. The FMD Chat site provides a safe, friendly, supportive atmosphere for fellow FMD patients to exchange information and fears. July 23 marked FMD Awareness Day, and I hope that some of our families, friends and medical providers took the time to learn more about this fairly rare disease that we have developed. My advice to each of you is to advocate, advocate, advocate and… have a peaceful day.