December 23, 2012
I was diagnosised with renal artery Fibromuscular Dysplasia in 2006 and at the time had never heard of it. I had many questions and found my local doctors unable to answer many of them. I was and still am the the only FMD patient for my family doctor. I used the FMDSA web site but it was a year after first being diagnosed before I contacted the FMDSA and very much wished I had contacted them right away. I found it incredibly helpful to be able to talk with other FMD patients and to hear their stories. After talking with another patient and Pam Mace I decided to seek a second opinion at one of the FMD centers, Mt Sinai with Dr Jeff Olin. It was a great decision for me and so helpful to talk with a physician who had cared for several hundred FMD patients. I had a second renal artery angioplasty done at Mt Sinai in 2007 and have had stable blood pressures since that time. I have attended the FMDSA annual conference in Cleveland since they started and find the conference so helpful and informative. I always learn something new and enjoy meeting with the other patients. I wanted to become involved early and hoped to be able to give to other newly diagnosed patients the kind of support I received. I am the nurse volunteer for the state of North Carolina and take the responsiblity very seriously. I get the support from the FMDSA that I need to be a good volunteer. As the nurse volunteer I always encourage the patient to attend the FMDSA conference if it is possible and provide the resources to seek a second opinion if they so desire. I find the FMDSA web site very helpful and refer patients to that as well. I am proud to be a volunteer for the FMDSA and hope to remain in that role for many more years. It is very rewarding. I also support the on-going research on FMD and the work of the FMDSA patient registry. There is so much yet to learn about FMD itself and learn the impact FMD has on lives of the people affected by it. I know public awareness and physician awareness has increased because of the efforts of the FMDSA. There are still plenty of people to reach and much education to be done. Thank you.
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MY ROLE:Volunteer Review from Guidestar