'I have to wear nappies on nights out because of my rare condition'

A woman from Rochdale with an extremely rare genetic condition has spoken about the help she needs for daily activities that most people take for granted. Rachel Winnard is one of two million people worldwide, or one in 60-80 people in the UK, with FOP (fibrodysplasia ossificans progressiva).

Her condition has exacerbated over the years - and she can now no longer leave the house without her commode or nappies as she isn't able to go to the toilet without support. The 37-year-old, who has been using an electric wheelchair since lockdown, was wrongly diagnosed for years as a baby and child.

Her body formed benign lumps - fibromatosis - and as a result, was treated with chemotherapy and radiotherapy when she was 18 months old. At the age of nine, she bumped her back on the frame of a garden swing, which saw another growth form.

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She was again treated with chemo and radiotherapy for a year but when more lumps formed on her chest, her parents were warned the treatment might stunt her growth and was taken off it. When Rachel turned 12, she saw a doctor who took one look at her toes, where her big toe is shorter than the rest, and was able to diagnose her with FOP - which causes the body’s soft tissues to gradually turn to bone; a process which is accelerated through trauma to the body, such as being knocked or bumped.

While there is no treatment available on the NHS or a cure, Rachel’s mum, who had watched a documentary on FOP, reached out to a doctor in America who specialised in the condition - Dr Frederick Kaplan. She sought more information from the expert, and when he was visiting the UK for a conference in Bath, travelled to see