A New York Familial Dysautonomia parent (wanting to remain anonymous) is reporting that their child, under the age of 20 years, tested positive for COVID-19, and is OK. Their child has some prior lung complications, common with FD patients. This child strictly follows the FD treatment protocols discovered by the FD Research Laboratory at Fordham University, NY. The child’s symptoms were a low-grade fever for two days, feeling lethargic and weak, slight dizziness, slight chest pain, and loss of taste and smell. Oxygen saturations were consistently above 95 throughout. Symptoms lasted six days. In the mom’s household, a few other family members also developed a fever and similar symptoms. The child with FD received a “positive” result when tested for COVID-19, but has thankfully fully recovered as have other family members.

In addition to monitoring this individual, Dr. Berish Rubin, Director of the FD Research Laboratory at Fordham University, NY, has been tracking several others in the FD community, who appear to be headed toward the same favorable outcome. He will be posting his observations in the coming days.

This is promising news. In the tsunami of fears surrounding the COVID-19 pandemic, we hope that this encouraging outcome will help to quell some of the panic. We still need to keep our guard up, as all FD patients are in an “at risk” category and each person with FD has a different level of medical vulnerability, some more grave than others. But, from the FD mom whose child is fully recovered from COVID-19, we gladly echo her observation: “I am so relieved and surprised that our child did this well.”

 

Ann Slaw, JD
President, FD NOW
Parent to young adult with Familial Dysautonomia

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