Hi My name is Jo , Me and my husband are going to do a 5 mile walk for FD. We feel very strongly about this cause as my sister has suffered with it all her life. She is in constant pain 24/7 and no amount of Morphine takes the pain away. She has to have yet another life threatening operation. From a young age this will be a total of 5 operations for this disease. At the age of just 21 years old she had to have a hip replacement. Which made her feel different to other 21 year old. Her bone was just crumbling away there was nothing left there so that is why she had to have a hip replacement. Which is very young to have to have a hip replacement. If you knew my sister you would never know she was in so much pain as she never complains just gets on with it. She still managed to build her own dog grooming business as she did not want to claim Disability allowance. She wanted to earn her money.
Now she has a big hole in her scull where the bone is infected by FD and is now making the bone crumble away in her scull. She has to have a mesh over her scull to stop her brain getting infections in it as its only the skin covering her brain at the moment.
My sister is amazing how she carries on. She had a baby boy last year which they think made the FD grow faster and spread. She used to have it only in her left side. now its more likely it is all over her body.
People like my sister never have a break from the constant pain they are in and there is no cure. Fibrous dysplasia is a disorder where normal bone and marrow is replaced with fibrous tissue, resulting in formation of bone that is weak and prone to expansion. As a result, most complications result from fracture, deformity, functional impairment, and pain.
Please help me raise some money so they can do a lot more research into this terrible disease and help stop my sister and others that are in the same situation being in pain 24/7.
Thank you for your support.
Jo & Mart