Hi, I’m Rachel, and was diagnosed with FOP when I was 12. I’m married to Paul and live in Rochdale. I have a crazy and fun family who I’d be lost without. I love socialising with my friends, especially watching bands. I love dancing but my leg has locked because of my FOP. I can’t stand without the use of a crutch, so I can’t be on my feet for long but I still hit the floor! I love children and with Paul’s help we love looking after our nieces and nephews. I have recently had a lift installed at home to enable me to go up and downstairs by myself. Maintaining my independence it the most important thing for me. I am also trying to get a power wheelchair so I can get out and about – so watch out!
I have had some really painful FOP flare-ups recently but I always keep smiling. FOP is not going to stop me living life to the max.