The right clinical care is essential for children, young and adults with Rett syndrome because of the unique combination of debilitating medical symptoms and disabilities involved in having the disorder.
This is largely because many doctors, even consultants, might not have met someone with Rett syndrome before. Sometimes they haven’t even heard of it.
Although there are some specialist Rett syndrome clinics in the UK, depending where in the country you live, it can be difficult to get a referral to them.
You can find more information and contact details for these clinics and the doctors who run them below.
Long term follow up care/clinical management
Even if you can get into a specialist Rett syndrome clinic at diagnosis, ongoing follow-up, long term intervention and or co-ordination with your local area clinicians is often not possible.
With a life long, ever-changing multi-system disorder like Rett syndrome, as well as obtaining specialist help, it is really important for families to find a local doctor they can rely on to help manage the individual’s overall health, whether this is the Community Paediatrician, Consultant Neurologist or GP.
Preparing for your clinic visit:
Sometimes families have to wait a long time to visit a Rett Clinic. When you do go, be sure to go prepared with specific questions. There is so much involved in looking after the medical and practical needs of someone with Rett syndrome.
Write down what you want to get out of the visit and tell the doctor upfront that you have a specific list of things which need to be addressed.
Typically, they should be things that are not being addressed by your local doctors, which need the specialist input from a doctor who has seen a higher number of patients with Rett syndrome.
