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There is a wealth of information and support out there when you get a diagnosis of FOP, but it can be overwhelming to read too much too soon.

Take one day at a time, and only search out answers when you feel ready to do so.  If it starts to get too much, then pause and come back to it at a later date.  Remember to reach out and ask for help if you feel like it is affecting your mental wellbeing.  There is support out there, and FOP Friends or your local patient organisation can signpost you to talking and listening services which can help.

Remember, you are not alone on this journey, there is a community out there waiting to be your friend and to answer any questions or concerns you may have.  You just have to ask.  We’re here for you.