Over the last year and a half many anxious parents around the world, have been asking why those who have Floating Harbor Syndrome (FHS) have not been classified for inclusion in a high priority group, within the vaccination programs relating to COVID-19.
The advice we have to date, is that all persons with a formal diagnosis should be vaccinated as a high priority case. At the time of writing this information applies to ages 12 upwards.
Pending further investigation in this category of neurodiversity and genetic complexity, individuals with FHS must be considered as having a higher risk of contracting serious side effects due to the virus and should be treated as such. Most individuals with FHS have Developmental Delays and the CDC supports the advice given: –
“Some people with developmental disabilities may have difficulties accessing information, understanding or practicing preventative measures, and communicating symptoms of illness”.
We strongly advise that all Health teams around the World acknowledge that FHS individuals are in urgent need of protection in this area because failure to provide vaccinations to them may have a detrimental effect on their quality of life.
What FHS individuals must endure to live life are unique within their classification and are not duplicated within any other groups, or anywhere else for that matter.
With the Covid pandemic continuing world-wide, we all have to do what we believe is best for our family in keeping them safe.
Different countries have different instructions on staying safe when around people, so it is not a one fits all rule anywhere.
When it comes to Floating Harbor Syndrome, there is no current data available on whether your child is more susceptible to getting Covid or not, however given that this is a Developmental Delay, that has many complications, should alert the medical professionals to err on the side of caution and offer vaccinations to our children quickly.
One parent reports that they enquired about getting a vaccination for their FHS family member, to be told that the ‘condition’ has to be on the Government’s Medical List to be registered to receive their shot early.
The way to approach this, as FHS is so rare, is to contact your own family doctor, and ask them to intervene, requesting support for your child to get vaccination. It is because of the ‘unknown’ that should prompt urgent action.
There is no evidence available to suggest that anyone with Floating Harbor Syndrome should or should not have to wear a mask during this pandemic.
It comes down to the choice of the parent/guardian, on what is the best solution for their child.
Please stay safe and get in touch if you have any other concerns.
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