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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I Hate FMD by Heather Craven

There are times when I can’t remember what it was like before fibromuscular dysplasia invaded our lives. It’s only been a little over 18 months since Matt’s stroke and diagnosis, but some days it seems so much longer. If his FMD was a child it would now be a chubby toddler careening through the house and bringing joy. Instead it’s a disease sucking the life from Matt’s limbs and stealthily leaving a trail of heartache.

One of the frustrating aspects of FMD is that its victims often look completely healthy. If you don’t know Matt, or see him on a daily basis, you wouldn’t know that the basic acts of daily living leave him exhausted and in constant pain. Rarely will he express his physical symptoms and so it is easy to forget his limitations and expect life to be normal. His stroke left him with few obvious injuries. No limp, no paralysis. The tendency to forget his impairments and envision a normal life pace is one I fall into again and again, only to rub up against the wall of this damn disease and realize that there is no longer the possibility of normal.

FMD also seems to have an ebb and a flow. There are the good days when Matt has enough energy to share with us all and there are the other days when simply getting out of bed seems to be a cruelty. Today is one of those days, except I didn’t realize this because there are no post-it notes or schedules to announce these days. I thought he was being a cranky bastard and so I was doing my typical freeze-out bitch tactic because I couldn’t understand his grumpiness. He finally confided in me that the constant pain is so exhausting. That he is so damn tired of hurting. That although he doesn’t walk around the house moaning, he wants to. And just like that the FMD swooped in, stole my breath and left me in a pile of humility. That’s the kicker with this disease, it leaves no prisoners.

FMD isn’t about me, but there are times I wish it was. I wish I could take days of Matt’s pain so he could ride his mountain bike and then go out with his friends. So he wouldn’t have to pick and choose his limited range of activities and try to leave some energy to spend time with the kids. So he wouldn’t have to wake up and face a day of pain only to lie awake at night because he still hurts. I hate this disease.

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