A guide for those living with familial dysautonomia and their families.
It seems as though it has taken ages, and we understand the frustration that many have experienced as they wait their turn, but just as was anticipated when COVID-19 vaccines first became available in late 2020, vaccine is increasingly availability to different groups of people as we enter Spring 2021. We would like to share some very useful resources for finding available vaccine and anticipatory guidance on what to expect when you finally have your first and second doses.
Where to Find Them
Nationwide: CDC and Boston Children’s Hospital Vaccine Search:
Nationwide: NPR nationwide vaccine search:
In New York:
Eligibility Checker: NYC.gov/COVIDVACCINEDISTRIBUTION
Vaccine Sites: NYC.gov/COVIDVACCINE
Vaccines in NYC for People who are Completely Homebound: NYC Homebound Vaccination Program. New York City is providing in-home Covid-19 vaccinations (Johnson & Johnson) to eligible NYC residents who are fully homebound, have not already been vaccinated, and do not already have access to a vaccination program.
What To Anticipate When You Get The Vaccine
Anticipating “flu-likes symptoms” from the vaccine is very normal and commonly occurs from any vaccine. Those symptoms, which sometimes include fever, malaise, chills, body aches, or local site pain at the injection site, are all signs of our own bodies mounting good immune responses. So while that’s a good sign, we understand it can be very uncomfortable to most, and in FD may trigger an autonomic crisis.
For everyone who has had the vaccine already, most people with FD tolerate the first dose very well without any symptoms at all, which is also true in the average population.
And as in the average population, the second dose elicits more symptoms, because the immune system is already primed to take action from the first dose!
For this reason, we have been recommending to everyone with FD for the second vaccine the following guidance that will help reduce all of those symptoms and therefore prevent autonomic crisis.
The evening following the vaccination, we recommend to start taking ibuprofen around the clock (or acetaminophen if you have kidney or renal disease), and continue this for 2-3 days. To do this, we recommend taking the weight- appropriate dose (check the label of whichever medication you have) every 6 hours, including during periods of sleep. We recommend including periods of sleep, especially that first night following the dose, because some people with FD have awakened with a fever and had autonomic crisis immediately from this. Likewise, some people have only wanted to take ibuprofen or acetaminophen once they measured or felt fever or otherwise felt bad, and in these cases autonomic crises may have already started along with those other symptoms. But so far, in everyone who has followed this advice and taken their antipyretic (antifever) medication every 6 hours, they have felt fine and had no issues with increased autonomic crisis.
Which Vaccine Should I Get?
The bottom line, is any vaccine is better than none. So please make an appointment to get the vaccine that is available to you.
But here is further breakdown from what is currently known, which is subject to change as time goes on and more data becomes available.
Moderna and Pfizer vaccines require 2 doses separated by approximately 3 weeks. Johnson & Johnson (J&J) is a one-dose option but is a little less effective.
But all three available options at this time (Moderna, Pfizer, J&J) prevent severe effects of COVID-19, including severe disease, hospitalizations and possible death.
Moderna and Pfizer vaccines are 94% and 95% effective against having COVID-19 with any degree of symptoms. This does not mean it prevents catching it or giving it to others as much as those percentages, but in those percentages, the person who is exposed to the virus will not become sick from it.
J&J’s vaccine is 72% effective at preventing moderate disease in the U.S. and 85% effective against severe disease overall, and data has shown it has prevented death completely and hospitalizations after a period of at least 28 days.
For all vaccines, the person who got the vaccination is at the same risk level as having no vaccine until at least 2-3 weeks after vaccination, as it takes time for the immune system to react and produce antibodies. And for all vaccines, it is recommended to continue all measures of physical distancing, mask wearing, hand washing, and other hygienic measures after vaccination to continue to reduce spread, as the rates of disease are still very prevalent across the U.S. and globally.
We hope that helps answer some questions and minimizes anxiety related to where to find vaccine and what to expect when it becomes available to you.
The Dysautonomia Center