I have been dancing practically my whole life, it is my passion, the love of my life and my career. The Ballroom and Latin American style is not the most common sport but I was lucky enough to leave school and build a very successful career from something I adore. However, everything was stolen from me when I sustained a life changing injury to my right hip 3 years ago while on “Dancing with the Stars”.
During this life voyage, I have publically shared very little about my injury and rehab experience, only giving small sporadic updates on social media. I think mostly because I was more than desperate to dance again and for such a long time, it did not seem like a plausible goal.
However, throughout these 3 years, I have had 2 hip reconstructions, cortisone injections, MRI’s, X-Rays and countless other tests, treatments and rehab. If treatment was recommended, I tried it. I stopped calculating the hours spent on these appointments as it was so disconcerting watching the months and years slip by with no avail.
The trouble with my injury was the great difficulty in finding a diagnosis. Even though my injury was very treatable, it took 12 months to finally receive a verdict on the approach to repair my hip. So when I was fortunate enough to meet Richard, the CEO of the Children’s Tumour Foundation earlier this year and learn more about Neurofibromatosis (NF) and the difficulties patients encounter with awareness and achieving clear diagnosis, I immediately knew that I wanted to help in any why I could. I just felt on some level that I have an understanding of this unbelievably difficult and frustrating process.
I am lucky to say that after another year of dedicated rehab, I will be returning to the dance floor. However, my traumatic diagnosis experience gives me a small insight to what NF patients go through. Being so unwell and being misdiagnosed for sometimes years is so distressing and often so frustrating if there is no view to a positive outcome – it is easy to give up. However, the beautiful individuals I have met with this condition are the most positive and strong souls – they are true fighters!
This is what encourages me to continue my involvement with this growing community. Bringing awareness to a rare disease such as NF with Childrens’ Tumour Foundation, will change the lives for so many and hopefully provide better diagnostic skills, improved treatment and a brighter future for everyone affected by NF.