No one would ever choose to join our club. We don’t want any new members. We welcome them sadly; they come to us reluctantly. And yet, in the darkness of a horrible storm, we are there, arms open, ready to provide comfort, assistance, and most importantly, hope.
There are common diseases and there are rare diseases; and then there’s our disease, an ultra-rare disease called familial dysautonomia, or FD, the most Jewish of the Jewish genetic diseases. Only about 650 people have ever been diagnosed with it; only about 350 are alive with it. A complex dysfunction of the nervous system, FD causes many problems involving the heart, breathing, blood pressure, digestion, orthopedics, vision, kidney failure and the lack of even the most basic functions such as the ability to swallow, feel temperature, or shed tears.
Most cases these days are diagnosed at an early age. The parents of a very sick baby have searched for an explanation of what is wrong with their child. When they get the diagnosis, their momentary relief is followed by a free fall into despair. Their doctor, their rabbi, their family, and their friends have never heard of it. Ahead of them lies a foreboding and lonely horizon.
Then we welcome them into our club, the Dysautonomia Foundation. Finally, there is someone who knows what they go through, someone who understands their pain, their doubts, their fears, not as an outsider with pity or judgment or puzzlement, but
as their soulmates with empathy and familiarity. And then, little by little, we help them see a beam of light that turns into a beacon of hope. Here is hope, here is treatment, here is research, and here are others who are ready to help. Welcome.
