With feedback from parents of children and adults with Rett, we have been able to compile a user-friendly questionnaire that gives doctors all the information they need in a simple and unmissable way whenever you visit hospital, both as an outpatient and as an inpatient. We hope that having the passport available will enable healthcare professionals to quickly find out what your child or adult with Rett Syndrome’s needs are so that they can assess and treat them as needed.
From the basics, like quickly information treating clinicians how best to take blood, to more complex information like flagging up potential drug contra-indications. We hope the Reverse Rett Hospital Passport can help.
A list of side effects and common acute illnesses that occur due to Rett Syndrome. Symptoms and severity of symptoms vary significantly from patient to patient.
Visiting hospital can be stressful enough – record when and why you were in hospital so you don’t have to remember the details.
Research shows that most people with Rett understand much of what is going on around them. Record your details so others can be mindful over what is discussed around the patient.