A Canyon to Climb - Janice Mustafova's Personal Journey
Award holder and International Award Foundation ambassador, Janice Mustafova on battling a blood disorder and her determination to get her Gold.
I’m one of a few people in Ireland with a bleeding disorder, but my disorder has no name. I have all the symptoms of a full bleeding disorder, and certain drugs work for me in the way they work for other bleeding disorders, yet my disorder is unknown. It took almost eleven years for my condition to be diagnosed; my teenage years were spent wondering what was wrong with me. It took one doctor who knew me personally to do a single blood test that revealed my disorder. I was 24 at the time and completing my Gold Award.
It took some time to get my head around being diagnosed. For years I felt like the only person in the world going through a bleeding disorder, with medical staff doubting my symptoms and not understanding me. The heamatologist explained that she had seen similar cases to mine and reassured me that I did indeed have a bleeding disorder. I cried with relief and gave her a hug. Finally, someone had given me back my confidence and self-belief. If only she knew the freedom she had just given me - freedom from worry uncertainty.
Against the odds
The month after I was diagnosed, I informed the haematology team that I was going on a hike in the Grand Canyon as part of my Gold Award. I told them that I was going on my own and that it was something I had to do in order to get my Award. I had everything arranged before I was diagnosed and I was not going to back out. Luckily the doctors were supportive and told me the “dos and dont’s” in order to look after myself properly. With that in mind, I set off to complete my Award.
After five hard days of hiking to the bottom of the Grand Canyon and back up again, I’ll never forget the moment I dangled my feet over the edge of the Canyon, listening to the song ‘Chasing Cars’ by Snow Patrol - it was life changing. Who would have thought that at the age of 24, one month after being diagnosed with a bleeding disorder, I would hike the Grand Canyon from top to bottom and back up again, and all just for a Gold Award. I completed the hike with a smile on my face, not just because I knew it signified I had achieved my Gold Award, but also because I knew in my heart that I had achieved something for me. Something that doctors, family members and friends had deemed unreachable.
By sheer chance, it turned out that there was another person on the trip who had Von Willebrand Disease. She was such an inspiration to me as she was the first person I had ever met with a bleeding disorder. She had similar concerns to me but more importantly she had life experience of a bleeding disorder which she shared with me. It opened my eyes to how I was not the only person in the world to have a bleeding disorder. She made it sound normal, almost.
Despite all the odds, in spring 2007, President Mary McAleese presented me with the Gold Gaisce Award. She may not have realised the impact of this Award for me, but I feel that it honestly changed my life. Since achieving the Gold Award, I have continued to volunteer with Gaisce and the International Award Foundation. For the last three years, I have been selected to attend international conferences in Sydney, Mauritius and Kenya attended by HRH The Earl of Wessex. I have eaten at royal dinners and shaken hands with more than one head of state - with one or two knowing my name by now! I even had dinner in the same room as The Earl of Wessex on the night Prince William and Katherine announced their engagement.
But I suppose what I’ve learnt from my journey is that you cannot be defined by your condition. There are many ways in which my disorder restricts my choices, what clothes I can wear, for example, or that I can’t drink alcohol in case I fall, but it does not define me or my pathway in life. My diagnosis freed me from questions and surgeries that I should never have had. My diagnosis, even though it has no name, has provided me with an amazing support network of doctors, nurses and physiotherapists that know how to deal with every eventuality - leaving me to enjoy life and not allow any opportunity to pass me by.
A part of me
This is why I will never begrudge having the bleeding disorder or feel sorry for myself. It is a part of me. It fuels my ‘never give up’ spirit. It has taught me the value of knowing when the body needs a break, but yet knowing when the mind needs a push. It has given me the knowledge that I need to ensure that my family will be protected and looked after in ways that medicine didn’t know about until now.
Where will my next opportunity be? Who knows...but the one thing I do know is that I am a person with a bleeding disorder, not a person suffering from a bleeding disorder.
Find out more about the Award in Ireland and how you can get involved.