Welcome to the Familial Dysautonomia NOW Foundation blog! Whether you are in the FD community, the medical field or are a donor, this blog is for you. Each month, we’ll talk about various topics including treatments, daily life, and research updates.
Raising a child with familial dysautonomia is challenging. There’s host of medical issues to manage, disability laws to learn and governmental benefits to navigate. Often, I’m asked, “How do you do it?” I have only one answer. “Love.”
Our son’s physical body has taken a beating over the years from FD. He is unstable on his feet, suffers from dizzy spells, must take in some fluid through a tube surgically placed in his stomach, has trouble walking, has difficulty seeing, cannot detect pain, and tires easily. Most devastating is the toll his body has taken from many hospitalizations due to unrelenting autonomic crisis – a dangerous spike in blood pressure and heart rate. That said, he has graduated college and is working two part-time jobs, with his nurse in the shadows. To read Andrew’s full back story, please click here. The many treatments discovered since 2003 has greatly stabilized his body and he too is propelled by love, not only for his family but for his life.
Ann Slaw, JD
President, FD NOW
Parent to young adult with familial dysautonomia