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.