Raising money for the Fibrous Dysplaisa Foundation

by Tzarina Tuen Matthews in London, England, United Kingdom

Raising money for the Fibrous Dysplaisa Foundation
We did it
On 29th December 2018 we successfully raised £215 with 12 supporters in 28 days

I am aiming to raise money to donate to the Fibrous Dysplaysia Foundation who also treat McCune Albright syndrome.

by Tzarina Tuen Matthews in London, England, United Kingdom

I am a 19 year old student who was also diagnosed with fibrous dysplasia when I was 10. I have a passion for studying animals and have always had a passion for playing tennis and sport and managed to play to a high level of tennis before the fibrous dysplasia was causing too many complications for me to play.

Fibrous dysplasia is a non-inheritable random genetic mutation which causes non-cancerous bone tumour growth. It has no cure. If found in the skull or the spinal cord the results can be dire.

I was diagnosed with a large tumour in my right femur when I was 11, after breaking my leg on a tennis court. I was told for 6 months that it was a muscular injury when in fact I had a hairline fracture going through my femur where the tumour was. We only discovered this after 6 months of walking around as I fell again at school playing sport and although still able to walk, my father took me to A&E to b x-rayed and this is how we discovered the fibrous dysplasia.

I had a big surgery to take the tumour out and a metal plate put in. My recovery took about 2 years to have normal muscular development and I was still recovering up until my incident a couple days ago. 

Unfortunately in 2015 it was discovered that I had multiple rumours running throughout my right leg. I had been getting ankle pain for 5 years and it was assumed it was a muscular weakness again. 

I started taking bisphosphonates in hospital for pain management up until a few months ago. It was not successful.

A couple days ago I was tennis coaching which is my part time job, and something I have worked hard to achieve as my fibrous dysplasia meant I couldn’t play on scholarship in the US, and have a chance at attempting to become a professional player. 

Unfortunately I slipped running for a ball and my femur snapped completely in half. The way I fell if anyone else had fallen that way would have been fine but I was later told that due to the plate positioning and the bisphosphonates it meant that my leg had become brittle and the break was just under the plate. This could have been much worse than it was as it is in fact possible to die from breaking a femur.

However I have undergone a surgery yesterday at St Mary’s Hospital in London who have been nothing but kind and generous to me and helping me recover. It is a long recovery for me but all in all it means that the chances of breaking my femur again is incredibly low.

I have been surrounded by amazing friends and family throughout. I want to raise this money because some people will have to go through what I am going through, perhaps without the healthcare I have received and in much more serious areas of the body. There is no cure for fibrous dysplasia but prevention and pain management are all possible. 

The money can go towards aiding people less fortunate who suffer from both fibrous dysplasia and Mccune Albright syndrome. There are side effects to having to deal with diseases like this like depression and anxiety and these are just as treatable as a physical disability.

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