I’ve been lucky enough to previously write a blog post for Runr in February 2018. At that time, I had to pause my training for the London Marathon, as I was suffering from severe concussion after slipping over on ice (a trip to Accident and Emergency was involved although thankfully and unbelievably no fractures) I thought I would share my story again in hope that it may inspire others.
I was diagnosed when I was two years old with a rare Genetic disorder, Osteogenesis Imperfecta Type 1, also known as Brittle Bone Disease. It is estimated to affect just 5,000 people in the UK. Osteogenesis Imperfecta literally means imperfect bone formation and causes bones to break more easily than usual. There is currently no cure, although there are Clinical Trials and treatments aimed at helping the condition. I never know when the next fracture will be, or how it will affect my life.
I have Type 1 which is described as the mildest type, although I have had at least 50+ fractures. Type 1 is also described as an invisible disorder because I simply look like everyone else, unless you look very closely and see that the whites of my eyes (Sclera) are a blue/greyish colour. If you ran past me at parkrun, I guarantee that you wouldn’t know that I had any health condition at all.
I’ve just learnt to live with my condition and I’m proud of who I am and what I’ve achieved so far. I just accept I have to be careful and can never attempt something like skiing or ice skating. I’ve always been very sporty and active and I’m grateful that I’ve grown up with amazingly supportive Family and friends. I’ve also always been a very determined person even from when I was little. When I was 4 years old, I walked around with a broken arm, and nobody knew about it, until I fractured the same arm, but in a different place a few weeks later (apparently, I hadn’t complained at all about it being painful!) I was actually discouraged and excluded from P.E. when I started Primary School. The Local Authority initially wanted me to go to Special School because they simply didn’t understand my condition but by the end of Year 6, I was Captain of the School Netball Team.
I discovered Running after I couldn’t realistically or safely play Football any more after I fractured and dislocated my ankle when I was 14, although I still love a kick around when I can! (I think my record for keepy uppies is around 250) I fell in love with Running as it is something that I can easily join in with. It definitely helps myself both physically and mentally. One day I just decided to give it a try down the street and managed to go a bit further each time. Running is something that I really enjoy it even when it is pouring with rain. So far, I’ve completed 4 full Marathons including Yorkshire in 2016 and 2017, London in 2018 (the year it was absolutely boiling) and Paris in 2019 (My first trip abroad by myself) I’ve also completed 14 Half Marathons including the Great North Run, 5 times.
My passion for Running seems to grow every year and I’m always looking at how I can improve or when my next race is. This is always inspired by the amazing people and Communities that I’ve met along the way especially Runr, GoodGym, Marathon Talk and parkrun. For example, this year, in February I had the most amazing experience at Marathon Talk Run Camp in the Peak District. I was nervous about attending but the support and encouragement that I had from other runners was just incredible. In one weekend I managed to complete a local parkrun, a hill training session and a Half Marathon. I never thought that it would be possible as I was on crutches for 4 months last year with a bad hip and then managed to fall over and fracture my wrist in December 2019.
There are two people in particular who standout for always inspiring myself to keep running and to do the very best that I can.
I met Anji Andrews through joining GoodGym Newcastle (combination of fitness/exercise with volunteering) in April 2018. I was included from the very first session that I attended and I always felt that even though I had a hidden disability it was (and still is) never an issue. I’m very lucky and proud to have Anji as a good friend and my running coach. She is incredibly inspiring to me, especially through Running, as she is so knowledgeable, approachable, and always provides myself with brilliant advice. We share a motto between us to never give up, and this has really helped myself to get though tough situations such as injuries.
Someone else who is a massive inspiration to me, was my best friend in Primary School, Nicholas, who sadly died at the age of 12 from Leukaemia. Nicholas was the most kind, caring, friendly, funny and determined friend. The memory of Nicholas has always helped me to get through difficult times, and to keep on always pushing myself, for example, at mile 16 in the 2018 London Marathon when it was 24 degrees but I still had another 10.2 miles to go, or at the Paris Marathon, when my watch said 26.2 miles but I couldn’t see the finish line nearby.
I’m currently unable to run due to a problem with my Achilles, but I’m feeling determined, and more recently I’ve been out on my bike and will continue with strength/conditioning. Next year is my 30thBirthday, and Nicholas would have also been 30 and I really fancy some kind of Running challenge to raise money for Charity in his memory. I’m not sure what yet in terms of what I can physically do, or what will take place due to uncertain times but definitely watch this space!
