Justine has been taking part in The Games for a number of years. Read her story below…

I suffered two right lung collapses in my early twenties. At the time I was not diagnosed with Lymphangioleiomyomatosis (LAM) and was told that it was not uncommon for tall, slim and athletic people to have lung collapses. Nevertheless, despite suffering pains in my chest over the following 10 years, it was not until April 2005 after a left lung collapse, that I was diagnosed with end stage Lam.

I also learnt that during the ten years my right lung had completely failed. I had approximately 30% lung capacity and required oxygen 24 hours a day, and became wheelchair dependant.

Over the next 8 months my left lung collapsed a further 13 times, and in February 2006 I was hospitalised at the specialist Harefield hospital for six months. During this time I faced a number of close encounters with death, including a period on full life support. Even after 3 weeks in an induced coma, my struggles were far but over when brought round and I had to learn to walk again. I still remained on life support for many weeks unable to eat, drink, move and talk.

Finally, on 9 July 2006 and after 3 false alarms, I received a life saving double-lung transplant.

Life before LAM

In the early years, as a child I studied dance (Ballet, Modern Ballet, National Dancing, Aerobics, and Tap). The passion for dance continued and learnt Street Dance, as well as a short stint in African dance at University. To which my degree was in Drama, Sports and Recreation Studies and Art and Design, and if I was not rehearsing for any plays, or painting away – was at a local student pub! I enjoyed the social life and still did until my unfortunate diagnosis.

I have always been keen on health and fitness since a teenager, and tried to exercise and eat a healthy diet. I also qualified to teach aerobics and once obtaining this qualification, taught street dance for children at two different schools. My desire for healthy living involved me working in various food and juice bars across London.

Even though I had a main job, I also had part time jobs including the dance teaching, and then becoming a children’s entertainer. The skills including:- magic, balloon modelling, face painting, choreographer/dancing, games and story telling for boys and girls aged three and upwards. My weekends would be booked doing the kids parties and then going out socialising!

One of my hobbies even included buying some DJ equipment and had aspirations to be a famous lady DJ, but, the dancing and busy work schedule took over from that. My last job, prior to my diagnosis was working in a Health Club to which I was enjoying so much and working in different departments to gain experience for the ultimate move to become a General Manager.

Life after Lam

Since my double-lung transplant I speedily got back on my feet, and set about a challenge each year still alive post transplant. From participating in the UK, European Heart & Lung Transplant Games and recently for my first World Transplant Games (2011); travelling for two months in Europe; doing the Great South Bupa Run (2009).

I have now finished sailing training for the Clipper 11-12 Round the World Yacht Race, to which I join the last leg from June-July (2012). Being the first double-lung transplantee doing this race and also as a Transplant Ambassador to raise awareness whilst sailing into USA, Nova Scotia, Netherlands, Ireland and returning home to the UK.

I am also in the process of writing my life-story and hope to finish my book and I am seeking a publisher. Since 2005, I have continuously told my story to raise organ donor awareness and LAM disease both on a local and national scale. I do not wish to have endured any of what I suffered, but my life has been fantastic post transplant. Taking part in the transplant games have been amazing for the social aspect to be constantly inspired by meeting/hearing other people’s stories how transplantation transformed their lives. But also for the fitness aspect, and competing in various sports being part of a large community and recognised as a sporting achievement.

I love my life and how having lungs make me breathe freely again and how I can live a life, that without I would be with the angels instead. Organ Donation is simply the best gift ever one can agree too. I live by this motto of mine, “when your body is at rest, why let your organs go to heaven”