This summer, we’ve been working with partners at the Rett Disorders Alliance of the UK to review and edit the UK Rett Disorders Health Checklist, which was originally published in 2018.
As Rett Syndrome is a complex multi-system disorder, the Health Checklist is already split into sections of the body, or ‘systems,’ such as nervous system, gastroenteric and so on.
Hopefully, this makes it quite simple to review and edit. For the 2021 edit, in the first instance, we have only sent the individual sections out to members of the UK Rett Disorders Working Group who have indicated that they want to contribute to that particular section.
For the second part of the review, we will send all sections to all contributors. They will then have thirty days to comment and or suggest edits. After this, the patient organisations will bring all the information together and add on our own edited introductions.
Wesley will then make the required design edits and amendments to the Checklist in house at Reverse Rett. After this, both organisations will update our respective websites with the updated Checklist and voilà!
Whilst we do not expect there to be too many glaring changes to the Checklist, one thing that has stood out to me whilst working on this review is that there are many health messages in the checklist which are highlighted in red.
This is because they are important messages which the contributors of the Checklist wanted to stand out to families and carers and the professionals working with them.
Here are some of the key health messages which need to be shared widely:
Children and adults with Rett Syndrome should sit up when eating and drinking and for an hour afterwards because they are at increased risk of aspiration. Coughing or watery eyes can be a sign.
Children and adults with Rett Syndrome have low vitamin D levels. Vit D has shown to be protective against chest infections. Talk to your GP about Vit D supplements for your person with Rett.
Heart irregularities are common in Rett Syndrome.
Everyone with Rett Syndrome should be checked for Long QT at diagnosis, when anything significant changes in their condition, before starting or changing certain medications, and before surgery.