Living with Rett Syndrome

Looking after a child, young person or adult with Rett Syndrome can be complex because the combination of disabilities and medical complexities effect so many aspects of their life and physiology.

Below you can find resources that will help you look after someone with Rett syndrome and information about new symptoms and 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 UK medical community. Doctors who are unfamiliar with Rett syndrome will often do some limited research and read outdated information suggesting that Rett syndrome is a degenerative disorder which leaves them with the expectation that girls and women with Rett will not survive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.

*Citation

Tarquinio DC, Hou W, Neul JL, Kaufmann WE, Glaze DG, Motil KJ, Skinner SA, Lee HS, Percy AK. The Changing Face of Survival in Rett Syndrome and MECP2-Related Disorders. Pediatr Neurol. 2015 Nov;53(5):402-11. doi: 10.1016/j.pediatrneurol.2015.06.003. Epub 2015 Jun 26. PMID: 26278631; PMCID: PMC4609589.

Clinical trials

Clinical trials of gene therapies for Rett syndrome are underway already in Canada (adults) and the USA (children and adults). The UK regulator has now approved children’s trials from two gene therapy companies. These have not yet started and the number of patients required for each of these trials will be 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.

Hospital Passport

Going into hospital with someone with Rett syndrome can be challenging. It is always best if possible for someone with Rett syndrome to be accompanied by a family member or caregiver who knows them well enough to know when something is wrong and how to look after them on a day to day basis.

Having a Hospital Passport is useful incase there are times when someone with Rett syndrome cannot be supported by someone familiar in hospital for example, if they were to end up going to hospital straight from school. It includes information such as their preferred name, likes and dislikes, as well as NHS number and emergency contact details, and an explanation of Rett Syndrome.

Download Hospital Passport PDF (16 pages)

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.

 

 

Register someone with Rett Syndrome

Please add the person you care for to the Rett Registry UK. Registering means we can contact you directly about clinical trials and the latest research. It also enables us to make a better case for improved clinical provision and better treatments to become available in the UK.

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