For seven years Julie Banwell has lived with pain so severe she believes amputation is her only option.
Now the mother-of-three is speaking about her rare condition in a bid to raise awareness of living with pain.
The 41-year-old’s life changed in April 2010 when she fell on concrete steps outside a school.
She had stitches but the pain in her knee continued until, 18 months later, she was diagnosed with a poorly understood and rare syndrome called complex regional pain syndrome (CRPS) which causes persistent severe and debilitating pain.
Julie said: “I was an active mother and after a simple fall taking my little boy to school I haven’t been able to walk.
“There is no cure, just lots of treatments that do not help.
“The pain is so severe I’m fighting to have my leg amputated. I’ve considered self-amputation as it’s that bad I feel it’s my best option.”
She faced constant niggling and knee locking until doctors discovered a piece of her knee bone had broken off. She has been on crutches or in a wheelchair since.
Operations have had little success and it was made worse with another fall which led to more bone being removed from her knee.
She was told she was too young for a knee replacement, while physiotherapy, hydrotherapy and acupuncture has made little difference.
Limits to pain management at HRI and CRH means she needs to go to Bradford Royal Hospital every three weeks, facing a £50 round trip in a taxi.
Julie added: “Amputation is not the normal protocol for the doctors but I haven’t walked for six years.
“I feel life is on hold and my best chance would be with a prosthetic.
“People look at me and see my foot in a boot and think I’ve got a broken foot. They don’t see the knee that can’t bend, the purple leg and there is little understanding of pain which people can’t see.”
Her children, Leon, 21, Lakeisha, 17, and Logan, 11, help and daughter Lakeisha, a student, acts as her carer.
Julie says: “Lakeisha is amazing – she helps with my youngest child, she helps bath and dress me.
“My youngest son sent a letter to my consultant begging him to fix my leg. He says he wants to go swimming with mummy, play ball and play in the park with mummy.”
Julie has had to limit working, but still tries to go into Newsome Junior School when she can to help with children’s reading.
But even using public transport can be a challenge with uneven pavements.
Julie added: “There are support groups. I’ve met someone in Mirfield and a few in Leeds who have the same condition.
“People understanding what this condition is it would really help me. It would be nice to be able to go out into town in my wheelchair without getting strange looks off people.”
November 7 is Colour the World Orange Day aimed at raising awareness of the condition.