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1 reviews

Review for FMDSA, Rocky River, OH, USA

Rating: 5 stars  

My FMD journey started in 2004. I had persistent tingling in my hands and my neurologist ordered an MRI. Lucky for me, I had an obvious aneurysm. I consider myself lucky because without that aneurysm, the doctors would not have ordered further tests that confirmed not only the aneurysm but also FMD of both intracranial carotids.

Because of the commitment of FMDSA to attend conferences and work closely with medical professionals, doctors have more information about the disease resulting in new patients being diagnosed sooner. Although there are no treatments for the disease, there are treatments for symptoms and early diagnosis enables a patient to change their lifestyle to protect themselves from life threatening complications brought on by FMD.

FMDSA is funding a FMD registry that is collecting data that is being used to further study the disease. This is so encouraging to the patients and families because of the hope for treatment and possible cure or at the very least, just understanding of the disease and the symptoms.

The FMDSA conference is one of the most important aspects of the organization for me. The camaraderie between patients is uplifting and helpful when folks are feeling insecure in their health. The speakers are knowledgeable and make time for questions from the audience. In that conference room sits a tremendous amount of insight and education about FMD.

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Role:  Donor