There are new treatments in the works for those suffering from Familial Dysautonomia! Drs. Rubin and Anderson, co-directors of the Research Laboratory for Familial Dysautonomia at Fordham University, New York, USA announced the good news. “We are working on a novel and natural, commonly-consumed, chemical compound that will provide those with Familial Dysautonomia even greater autonomic stability.“ More medical stability for those with FD means fewer trips to the hospital, reliable attendance at school and work, and increased stamina and energy.
Since the early 2000’s, after discovering the FD gene mutation, these two dedicated researchers have continued to roll out treatments that have a direct and instantaneous effect on improving patient health and well-being. Understanding that those with FD are always racing against time, they pioneered a fast-track approach specifically focusing on natural compounds and diet changes. Bypassing the need for decades-long studies that yield only marginal results, their novel approach leads instead to treatments that are instantly available, safe, and proven to work.
Our son, along with many others, have greatly benefitted from these groundbreaking treatments. Many years ago, Andrew was languishing in the hospital for six months, on the brink of death. Every day, he would endure 1-3 autonomic crises, uncontrollable vomiting attacks accompanied by massive drooling, skyrocketing blood pressure and heart rate. He’d be given heavy sedatives to try and abate these autonomic storms, but the crises continued in perpetuity. He was down to skin and bones. With little time left for Andrew, my husband, Ken, and I began drafting our son’s eulogy. Just when things seemed bleakest, Drs. Rubin and Anderson discovered their very first readily available and safe treatment, tocotrienol, a form of vitamin E. After daily administering tocotrienol through Andrew’s g-tube, a portal surgically placed in his tummy, Andrew’s autonomic crises ceased in two weeks! We wept tears of joy. Our son was back, eating, smiling, and cracking jokes.
Andrew, and the other children and adults with FD who carefully follow these treatments are walking examples of Drs. Rubin and Anderson’s amazing, life-saving work. Since their tocotrienol discovery, many more treatments have followed. Click here to learn more. In 2020, we look forward to adding a brand new treatment to their impressive list.