I'm a woman in my mid-40's from Ontario, Canada. Growing up, I always seemed to have a lot of health problems, including three eye surgeries and chronic kidney/UTI infections (that have continued on into adulthood). It just seemed the norm for me and it didn't seem to interfere with my participation in sports or any other everyday activities.

In my mid 30's I was diagnosed with hypertension and tachycardia, neither well-controlled with meds. I spent years having test after test to try and find a cause. During this time I had repeated surgeries for cholesteatoma in my middle ear during these years, gallbladder removal, along with other events that complicated my life during this time: losing my brother Tom to leukemia, giving up my teaching career due to hearing loss/other health issues, etc..

I've also had a myriad of testing done to try and resolve some of my medical problems. I've had too many lab tests to remember, EKGs, echocardiograms, CT scans and MRIs, breast biopsy, bone marrow biopsy, ENG, gastroscopy, sleep study, ear debridement every six months, numerous ultrasounds and x-rays, etc.. I've seen many specialists including: cardiologist, otolaryngologist, endocronologist, neurologist, opthamalogist, urologist, internist, nephrologist, allergist, dermatologist, general surgeons, oncologist, radiologist. I've had two years of specialised physiotherapy for vestibular rehabilitation. Some of this testing/these specialists resolved some of my health issues, but many remained a mystery.
    1st Annual FMDSA Conference, Cleveland, Ohio, June 2008

During a cardiac stress test, in the fall of 2007, the internal medicine doctor overseeing the test commented that my blood pressure was too high for someone my age and was unacceptable. She checked my chart again and said she thought I might have something called "Fibromuscular Dysplasia". I thought this was strange, as doctors rarely suggest you may have a specific disease. I went home to look it up online and was amazed to find that it was a perfect 'fit' for all I'd been coping with.



A CT scan confirmed bilateral renal stenosis due to Medial Fibromuscular Dysplasia.

I had an angioplasty on March 26th. This was to investigate both and open the worst (right) of my renal arteries. What was supposed to be an overnight stay turned into almost a month of hospitalization and the loss of most of my right kidney to a large thrombosis. I ended up having 3 angioplasties in 7 days, 2 stents (I thrombosed after each stent), a 12 hour TPA drip, and more pain than I've ever experienced - by a lot. This trauma seems to have triggered something else (Ehlers-Danlos is what I'm being tested for) and I've had severe joint pain and daily subluxations/dislocations, ever since.

I'm now on blood thinners (Coumadin, Plavix) along with several other meds and receive frequent monitoring (I'm still having to have my blood tested weekly, a year and a half later and am told I will be on Coumadin for life). I am fortunate to be a patient of Dr. Jeff Olin (Mt Sinai, NYC) who I see in NYC every six months, and am also being treated by several wonderful physicians/specialists in Ontario.

This year I was able to share my story, along with Pam and other patients as well as Dr. Olin, in an article (we ended up on the front page!) in the Wall Street Journal about how FMD is really not so rare at all. It's a wonderful thing that awareness about this disease is starting to spread, thanks particularly to the efforts of a special group of patients and doctors.