my story

Nish Rai

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I am 19 years old and was diagnosed with mono-ostotic Fibrous dysplasia in the right femur in 2012.

 

At age 8, I broke the bone playing football and spent 6 weeks in a splint in bed followed by many months of recovery. The doctors could not explain how the strongest bone in the body could be broken clean through, so easily, playing football. This is because at the time they did not diagnose fibrous dysplasia, not even looking for an underlying cause.

 

As a result, I relapsed in 2012 while running, developing a stress fracture that left me unable to walk. It was discovered that my bone had bowed outward. I was then referred to the Birmingham Royal Orthopaedic Hospital where a bone Biopsy confirmed FD.

 

Following this, I had a plate and screws inserted into my femur to strengthen it and prevent further bowing. The metalwork was taken out after a year due to many complications. It was replaced by an osteotomy to straighten the bowed bone and I had an intramedullary rod inserted through the femur to strengthen it.

 

During this whole time, I had numerous fractures in the same area restricting me to bed rest, only walking rarely and if so with crutches. This whole experience caused me to miss a total of around 2-3 years of school. This included missing more than half of my GCSE exam course with pain in that area the majority of the time that could not be explained. I am now limited to a light jog for a few paces with no further activity. I was a very active child and have not been able to run since 2012.

I had always held hope that after I had finished growing, the bone would fully heal, become normal and I would be able to continue with my life as always intended, as a very active person. This thought was one that comforted me and helped me stay positive in whatever I went through. In my most recent appointment, I have been told that this will not be the case and that it is something that I am just going to have to live with. This whole experience has affected my life in an enormous way and despite going through all of this I consider myself very lucky that my case was not more severe, as I know it can be, and I am aware that people go through much worse.

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The realisation that this is not going away has inspired and affected me in a very profound way. 

...Making Waves

This and my understanding that I am part of a larger community going through their own experiences has driven me to take matters into my own hands - ie: reducing my reliance on doctors and wanting to help others going through the same thing.

 

This is why I wish to organise a global event to raise awareness and funds for Fibrous Dysplasia and McCune Albright Syndrome.

 

Swimming has been the only form of activity that I have been able to do to keep fit and therefore my idea was to encourage people with FD and MAS around the world to participate in a sponsored swim. In this way, each person will have their own personal reason for taking part while all sharing common experiences and one common goal.

I know first-hand that this condition is extremely difficult to live with, especially as a child, and people simply do not know about it.

 

This is where we can make a difference.

 

Raising awareness of FD/MAS will encourage all to learn more about the condition and provide more money and support for scientists that conduct research into the field developing our understanding of the condition. We can do all this so that in the future those with FD/MAS do not have to go through the hardships we have.