After receiving a devastating diagnosis of the rare genetic disease CADASIL in 2009, I decided I would cope better with a condition for which there is no cure if I became active in the global CADASIL community. I now advocate for all rare and rare genetic diseases by being public about my own diagnosis and what it is like to live with a chronic illness. I have good days where I enjoy life fully, and I have not-so-good days when my symptoms are overwhelming and I don't leave home. I reach out to others who are struggling with their own diagnoses, I write/blog about my experiences with a rare disease, I am active in several support groups on Facebook and elsewhere online, I attend conferences and webinars when I am able, I am a volunteer for CADASIL Association and Global Genes/Rare Project, and I live each day with the hope of a cure for CADASIL and the thousands of other rare and undiagnosed diseases afflicting so many people.
I’m a Patient Leader