In celebration of Rare Disease Day and the 2013 theme, Rare Disorders Without Borders, fibromuscular dysplasia patients and those affected by FMD around the world are sharing their stories about how FMD has impacted their lives.
When I first looked up information on the internet on FMD; I found foot and mouth disease or things that stated that I did not have long to live. I felt very much alone.
There were moments of frustration because in a lot of cases I was the one who knew more about my disease then the medical professionals treating me. An example of this was being in the ER with a blood pressure of 230/120 with a severe headache. At the time, the last thing I wanted to do was to have to explain what was wrong with me.
There are times that I would want to hide and but I found that while my life has changed being a “zebra” has only made me stronger. For it is a matter of accepting change and realizing that it is ok for me to have moments to grief. While I have had to stop doing some things I love, I have been able to start new things.
In July of 2011, I was diagnosed with Pulmonary Arterial Hypertension thus making me a medical zebra one again.