This guide is for patients with a lysosomal storage disorder called Fabry disease. It explains the structure of care you may receive at your specialist treating centre.
If you have recently been diagnosed with Fabry disease, you can use this guide to understand how to make an informed choice about your treatment by getting the right information from your specialist doctor. You can also use this booklet to prepare for your check-ups by recording relevant symptoms and test results to track your disease progress.
In this guide
In this guide you will find information about Fabry disease and the Fabry care team you can expect to meet. It covers the two main treatments available for Fabry, when it's not an option and advice on making an informed choice about treatment. You'll also find suggested questions to ask your Fabry specialist all in a handy tool that gives you space to record information about your own experience and symptoms to help your specialist to understand how your Fabry is affecting you