Living with Rett Syndrome

The combination of disabilities and medical complexities in Rett syndrome can be difficult to manage.

Below you can find resources that will help you look after someone with Rett syndrome and information about pathways for managing symptoms.

Staying healthy with Rett Syndrome

Recent research has shown that people with Rett Syndrome can live into their 50’s with adequate medical care, yet the condition is still poorly understood amongst the medical community worldwide.

Doctors who are unfamiliar with Rett syndrome will often read outdated information suggesting that Rett syndrome is a degenerative disorder which leaves them with the expectation that girls and women with Rett will not survive into adulthood. Although some girls with Rett syndrome do not survive into adulthood, most can, with adequate health care.

 

Clinical trials

Clinical trials of gene therapies for Rett syndrome are in Canada, USA, UK and Australia. The numbers needed for these first clinical trials are very small.

The best way to stay updated about UK Rett syndrome clinical trials is to register the person you care for on the Rett Registry UK. This gives us permission to contact you directly as and when any information about upcoming trial opportunities becomes available.

You can also contact the trial sites directly via email through details shared on the clinical trial listing on clinicaltrials.gov.

If you are interested in participating in UK clinical trials either now or in the future, it may also help to have your child seen by one of the clinicians involved in UK Rett syndrome clinical trials.

These are currently: Prof Banka-Manchester, Dr Lumsden-London, Dr Shetty-Edinburgh. Find more information about these clinicians and how to be referred to their clinics through the button below.

 

 

Rett syndrome Emergency Medical Alert Card

Emergency health plans and/or hospital passports work well when alert cards cannot convey enough information or when there are specific issues affecting a patient which need to be highlighted.

This alert card provides:

  • Top line information about baseline presentation in Rett syndrome
  • Common acute illnesses and infections in Rett Syndrome
  • Other key considerations such as which medications to use with caution
  • Emphasis that research shows that survival into the 5th decade is typical in Rett

To get your Alert Card, you must be registered on the Rett Registry UK. Email us to let us know if you have not received your card within a week of registering [email protected]

Sign up for Rett Registry UK here.

Communication Passport

The Communication Passport template was produced by the parent of a young person with Rett syndrome and is a brilliant way to communicate all the various needs that your child or adult has and a blueprint for looking after them, should anything happen to you.

This document is set up so that you can edit it directly and then print or save as a PDF and send to school or wherever else she or he goes, giving you a way to provide insight into their needs and who they are, when you are not present.

Fill out the template here.

 

 

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