The COVID-19 pandemic has changed many things, including how we manage patients with chronic neurological conditions. The Center manages patients with familial dysautonomia, with the pandemic continuing, the team had to come up with new ways of taking care of their chronic illness.

It used to be that each year, families traveled to New York to undergo a series of check-ups that provided a head-to-toe work up. Once the pandemic hit, the population were urged to shelter in place, which meant the regular check-ups were on hold.

With telemedicine ramping up, the team faced a dilemma. How could they make sure patients were getting the same detailed evaluation of all their organs over a video screen?

Our answer to this was to create an FD Kit. The kit, which is sent out to families before their annual tele-medicine visit contains sensors for measuring the heart, blood pressure, and the lungs. When patients connect for their virtual visit, they use the kits in the same way we would use the equipment in the laboratory. From the comfort of their own home, families can be assured that we can still listen to their lungs, scan their heart beats, measure their oxygen saturation, and monitor their blood pressure. They also have the ability to record and send pictures and videos so we can continue to track their natural history.

The kits, which were donated by the Dysautonomia Foundation have made it possible for families to receive complex care from the comfort of their living room. It’s one more way the Center has advanced the care for patients with familial dysautonomia.

See our video, featuring our amazing staff welcoming you to your new FD Kit.