Are people with Rett at an increased risk from COVID-19?

Update 1st June 2020

Reverse Rett medical advisors have asked us to inform families that all people with Rett Syndrome are at high risk from complications of COVID-19 and should be shielded in the same way as anyone else who is deemed extremely vulnerable.

During the on-going COVID-19 crisis, there has been some debate in the community about whether or not people with Rett Syndrome should be considered vulnerable, as a group, or at high risk of complications from Covid-19 infection.

Some families of both children and adults with Rett Syndrome have received letters advising them to shield and some have not. Some received letters late, several months into the crisis and some have received them after contacting their GP directly or registering on the government website.

At Reverse Rett, we continue to advise caution to all families and carers of children and adults with Rett Syndrome. Even if you are not sure if your child or adult is vulnerable, where possible, try to follow the guidance for shielding which is as follows: 

Who this guidance is for

  1. If you wish to spend time outdoors (though not in other buildings, households, or enclosed spaces) you should take extra care to minimise contact with others by keeping 2 metres apart.
  2. If you choose to spend time outdoors, this can be with members of your own household. If you live alone, you can spend time outdoors with one person from another household (ideally the same person each time).
  3. Stay alert when leaving home: washing your/their hands regularly, maintaining social distance and avoiding gatherings of any size.
  4. You should not attend any gatherings, including gatherings of friends and families in private spaces, for example, parties, weddings and religious services.
  5. You should strictly avoid contact with anyone who is displaying symptoms of COVID-19 (a new continuous cough, a high temperature, or a loss of, or change in, your sense of taste or smell).

The Government is currently advising people to shield until 30 June 2020 and is regularly monitoring this position.

This information has been taken from Public Health England Guidance on shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19

Easy read guidance can be found here Guidance on protecting people most likely to get very poorly from coronavirus (shielding)

Here are some things you can do to try to keep someone with Rett syndrome safe and help identify issues early:

1)Take daily observations (temperature, blood pressure, heart rate, oxygen saturation). You may not have all of this equipment, but the more you can do the better. If there are any concerning readings, or if there is a marked change from her normal readings, please do inform a medical professional.

2) Follow the Public Health England strategy of social distancing, even within your home, and hand washing as much as possible. Any non-essential contact with others should be reduced if possible.

3) Ensure that you monitor the person’s symptoms closely. If they develop a fever or dry cough, please do inform a medical professional. Moreover, if they develop any new respiratory symptoms/you see a change in their behaviour that concerns you, please do inform a medical professional.

Help arranging collection/delivery of essential supplies:

In many local areas, informal groups have been set up with volunteers who can help which you can find by searching *name of town/village covid 19 support on Facebook or on search engines. These groups can also provide information on cafes, shops and restaurants in your local area who are providing delivery services.

Be aware that these are informal groups and although some have background check requirements and processes for managing money etc whilst helping self-isolating households, some will not, so care is needed in making arrangements for assistance. 


If you would like to donate to the Reverse Rett Resilience Appeal, please click here

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