Kate K. My life and health is in ruins due to FMD and misdiagnosis. The FMDSA people have not really been good advocates or help. I am alone, with two teens and my own mother watching me disintegrate due to this disease and the complications. I am still explaining to every new doctor I see what FMD is. Why is this? I raised a few hundred dollars for this site through friends and personal donation. I do not have enough money to pay for my public insurance, food, meds. Let's talk about the complications. Let's freaking at least get the word out to doctors so I don't have to go to urgent care and spent 15 minutes explaining what FMD is, and have them looking in Wikipedia to get the beta. FMDSA might be nice if you live in Ohio, but the rest of us are suffering and there are MANY side diseases and leftover pain... I am at GFR 54 and dropping. Autoimmune arthritis, sudden syncopes (due to blood pressure), tachy arrhythmia (due to blood pressure). Chronic flank pain that leaves me in tears. Things I never had before my FMD angioplasties. I was an elite athlete and member of the pro ski patrol. Now it seems there is autoimmune arthritis and I was told FMD is autoimmune so led to this.

But last weekend, when I had severe dactylitus, the doctor of course, did not know what FMD was so I sound like I am making something up.

Yes, I've been accused of wanting to be sick. Look at my life. Live with me a day. Who would possibly want this compared to what I had. Who? You'd have to be crazy. I see a therapist and I am not crazy. I am in grief for the life I've lost, and near to giving up my fight against FMD.

I guess if I could make this not happen to one other woman out there... that is why I write here.

But no, other than initial diagnosis (which took me three years of fight, fight I no longer have in me as I have weakened so much) for the docs to take care of the "plumbing issue" and stop just giving me hypertension drugs, I have lost my faith in the health system, and especially in doctors. Just last weekend I was in urgent care with a huge case of dactylitus and a stage three failing kidney I had to once again, for the millionth time, explain what FMD was.

I sure wish I had my money back. I could use it for health costs. I am very poor at this point as I've been unable to work. My work is creative and it's been gone since 2009. Now I learn I will lose my fingers, possibly my eyes as this other disease, secondary to FMD takes over (common to have multiple autoimmune diseases apparently). I don't date, don't have friends and my kids live 500 miles away with their dad who asserts my illness, FMD, does not allow me to take proper care of them. Though he doesn't help with financials. The initial confusion era, me with syncope, wasted angiograms where no intervention was done, my fight for the right diagnosis led him to a healthy woman.

Just get the word out. How many docs know how common FMD is? Well, by my own observation, not many even know it is a disease.

Margo H. Me too.