Rachel

I am married to Paul and live in Rochdale. I love socializing with my friends especially watching bands. I love dancing but just recently my leg has locked so 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 have started going swimming to keep myself mobile and with the use of a float I can do at least 15 lengths. I love children and with Paul's help we look after our nieces and nephews. My dream is to have a baby of my own one day!

I was born a healthy baby except I looked like I had bunions on my feet.  At 19 months old a lump appeared on the back of my neck, I was sent to Manchester children’s hospital were a biopsy was taken and I was diagnosed as having Aggressive Fibromatosis.

I underwent 10 months of chemotherapy, in which time the lump on my neck grew all down one side of my back. But by the end of the 10 months on chemotherapy the lumps seemed to have disappeared.

From 2 and a half years old until 9 years I was free of lumps and led a "normal childhood". At 9 years old I banged my back on a swing and the lumps came up again all down my back. I had another 3 months chemotherapy and 4 months radiotherapy.

When I was 12 years old I was diagnosed with having FOP, I was on a routine check up at the hospital and my consultant asked to see my toes, thats when they knew my bunions were the fop short toe!

I have restricted movement in my arms, neck and legs. I moved out of my parents home in April 2008 and my fiance Paul is now my carer.

Nothing stops me going out and living life to the Max.

I have made lots of friends who also suffer with FOP and hopefully one day there will be a cure for all of us.

Date of Birth: 
Monday, 23 July, 1984
Diagnosed: 
July, 1996

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