Just by looking after your diagnosis or your child’s, you become an advocate. In learning and educating yourself and others, you become an advocate. First and foremost, an advocate for yourself or for your child. And then, slowly, an advocate for PVNH.
Every day brings a new opportunity to be a PVNH advocate. If you are comfortable with the idea, talk about it, blog about it, reach out to organizations who may have an interest in PVNH and continue to further your knowledge of PVNH.
I, for one, have been very vocal about Ella’s PVNH and how it has affected her, me and my family. Since Ella’s passing, I represented the PVNH Support & Awareness TM at the Canadian Organization for Rare Disorders (CORD) Conference in 2010 in Ottawa and in the American College of Medical Genetics’s 2011 Conference in Vancouver – again representating PVNH as a family advocate, thanks to Genetic Alliance which granted me registration.