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16/03/2020

Updated advice for families of people with Rett Syndrome in the UK re Coronavirus

Please note: 

This information is subject to change as national government guidance evolves. Individuals with Rett Syndrome who have additional complex medical needs may need to take additional precautions and in the first instance should speak to their GP or local clinical care team.

If you have questions that are not answered in the below please contact us on info@reverserett.org.uk While we will do our best to answer all of your questions, please note specific medical questions should be answered by your GP or consultant who has full access to your child or adult’s complete medical history.


Last updated: 16.03.2020

At the moment we don’t know how infection with Coronavirus, also known as COVID-19, will affect people with Rett Syndrome. 

In those who are well it may be a mild illness, but those who typically experience regular chest infections are likely to be at risk of more severe illness.

Everyone with Rett Syndrome is a unique individual and their circumstances will vary. 

The Medical Advisors to Reverse Rett recommend the following measures in addition to Public Health England advice which is changing as we speak:

  • Look after your person with Rett Syndrome the way you usually do and keep up all their usual medication and hydration regimes.
  • Make sure you are up to date with repeat prescriptions and have measures in place for prompt access to a course of antibiotics should these be needed.
  • Regular hand washing is the most effective thing that you can do to decrease your and your person’s risk of infection. Wash your hands regularly for more than 20 seconds and in particular after being in public places. Avoid touching any surfaces that are touched regularly, such as door handles and handrails and try to avoid touching your face as much as possible.
  • Keep the hands of your child or adult with Rett Syndrome as clean as possible and nails short. If your child or adult brings their hands to their mouth frequently, try to help them avoid touching surfaces as much as possible. You will know how best to do this and whether it is possible. Some ideas are; tucking hands/arms into a blanket, bracing, if in wheelchair, keeping the chair further back from tables and countertops than usual.
  • Wearing a surgical or cloth mask will not protect you or your child/adult from infection. It will only help protect others from being infected if you already have COVID-19 and are coughing and sneezing.
  • Avoid close contact with anyone with respiratory symptoms.
  • Stay at home as much as possible, even if no one in the family is symptomatic.
  • Avoid places where there is likely to be an increased risk of exposure such as crowds, especially in poorly ventilated areas.
  • Make sure your person has been fully vaccinated against other preventable infections, including the influenza vaccination.
  • Currently there are no blanket recommendations about school attendance. This will depend on your local circumstances, individual advice from your local clinician and your own sense of the best course of action for your family.
  • If you are employed and you haven’t already, you should contact your employer to consider what reasonable adjustments can be made to your working conditions to help protect your child/adult from infection.

Certain medications such as Benzodiazepines (for example, lorazepam, diazepam) and Chloral Hydrate may exacerbate breathing problems caused by complications of COVID-19. If your child/adult with Rett Syndrome is on these medications, speak to your doctor about whether a plan to taper off the medication could be helpful in order to best prepare for the individual contracting COVID-19. It is important to recognize that reduction of these medications may not be possible in some individuals because of their clinical status.

Important: Do not attempt to decrease Benzodiazipines or Chloral Hydrate without medical advice as this can also be dangerous for the patient.

If you think that you or your child/adult might have COVID-19, dial 111 and follow local advice for the testing process. Please email or phone your local clinical care team to let them know you have been tested and the result as soon as it is available.

Last updated: 16/03/20