Are SynGAP Patients At a Higher Risk if They Test Positive For COVID19?

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Hans is a member of the SRF leadership team and a SynGAP dad.  He trained in Internal Medicine and Infectious Diseases at Beth Israel Deaconess Medical Center and completed a Clinical Investigator Training Program with a Masters in Medical Sciences from Harvard/MIT Health Sciences and Technology.

His short answer to the question of ‘Are Syngap patients at higher risk if they test positive for Covid19?’ is no.  

Syngap patients are not automatically in the higher risk population.  Hans is not alarmed for his own child as Syngap does not compromise the immune system and Covid19 attacks the respiratory system, not the neurological system.

There is no reason to believe Syngap patients should be in the high risk population. However, it is important to consider how Syngap patients usually react to other viruses.  

  • Does fever trigger more seizures?  Fever normally lowers the seizure threshold.
  • Do they have a history of aspiration due to their low tone?  This is often a challenge with kids with low-tone.
  • Does their medication compromise their immune system?  This is a always a good question to ask your doctors.
  • Do they have other underlying conditions not related to Syngap that could be considered high risk?

If the answer is yes then their reaction to the virus might be more severe than the rest of the Syngap population.  Also, as a reminder, in this time of Coronavirus, remember to always seek tele-health options before going in-person to see a doctor.  Call first.  If you child is having seizure activity, if it is safe, take video and send it to your doctor.  

This is very much in line with what the the Epilepsy Foundation has been communicating. You can find more information on their website.  Note that SRF is a member of the Epilepsy Leadership Council which is how patient organizations engage with EF.

If you missed the call, please see the full meeting recording.

Finally, SRF is family-led, we understand these times are difficult and as an organization we are committed to helping SynGAP families.  Stay in touch with us via our weekly open Zoom meeting and via the Facebook groups (SRF/US & SGN/Global) where we will be sharing resources on a regular basis.

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