We cannot tell you that we know how you feel right now or how you may feel as time goes by…
The main thing to try and remember at this stage is that you really aren’t alone. It’s easy to feel isolated when you find out you have an uncommon condition, but getting the correct diagnosis means you should now have access to the right expert care team who understand your condition and can help.
We hope that many of the questions you may have are answered on our website, but don’t be afraid to ask your care team anything that isn’t – or to give us a call. There really is no such thing as a stupid question – what is important is that you have information you can understand.