So the fairer sex are from Venus, says John Gray. I always knew I wasn't from around here! Women are generally very resourceful and inherent survivors. Often we have a circle of close girlfriends with whom we form a "sisterhood" of sorts. We stick together through thick and thin, openly sharing laughter and tears, allaying worries, imparting advice, experiences and stories. Come rain or shine, supporting in moments of commiseration and lifting each other up in times of need, whilst always ready to celebrate with a carafe of wine and some delicious bite sized canapés. I believe if you're going to do something, you might as well do it right!
Women are used to bearing it all, talking candidly and honestly on every topic you could possibly think of. In a safe environment, we are willing and able to share our deepest thoughts and bear our soul without fear of judgement or incrimination. Put a few women in a room who have never met before, and we'll always find something in common that binds us, no matter what our upbringing or background.
I have often been asked why I'm willing to share my story in such an open manner, and write about every aspect of living with a rare disease. Most people wouldn't want to reveal to all and sundry, what are deemed personal details. Foregoing privacy, exposed as I lay my cards on the table, I felt rather uncomfortable at first, yet after a while it became easier and the benefit of reaching out to fellow sufferers, and creating greater awareness, became plainly evident.
Through a combination of writing and public speaking, I feel compelled to shed the dark cloak that I grew up wearing, being born with a rare genetic disease. By speaking out in an honest and candid fashion, I continue to campaign, for this is where I can make a difference. Telling my story allows others to hear and understand first-hand, what it's really like to live with a rare disease such as Gaucher. As informative as a doctor's lecture can be, medical terminology can cloud the issue, so it's a refreshing change to also hear the patients perspective, looking at everything in a very different light.
Connecting with fellow sufferers, they too can benefit highly from hearing another patient's personal account. Not only may they be able to relate, having possibly gone through similar experiences, it also becomes educational and an intrinsic form of support. For not all stories begin "Once upon a time" and finish with "and they all lived happily ever after", as every patient's story of living with a rare disease is unique.
Do you want to share your story, but don't know where to begin? Global Genes and My Normal, National Gaucher Foundation of Canada, have co-produced a great toolkit to help those suffering rare diseases who want to use storytelling to raise awareness.
Learning you or a loved one, has a rare or undiagnosed condition can be scary, confusing, isolating and often life-changing. "Where should I begin? How do I communicate what is going on with my friends, family, or healthcare providers?" Many within the rare disease community don't realise what a huge impact they can have by sharing their story. Telling your story can be tough, but this toolkit is intended to help overcome the challenges by offering advice on ways to get started.
Each toolkit includes a resource section, FAQ section, video tutorials and patient advocate/expert testimonials. These collaborative resources educate rare disease advocates about issues critical to their journey. Some toolkit topic examples are: Starting a Non-profit: The First Steps, Parent A Child With A Life-Limiting Illness, Genetic Testing, Becoming an Empowered Patient.
As a worldwide community, telling our exclusive stories helps everyone living with a rare disease. Whether you are from Mars or Venus, together we can work towards a better tomorrow!