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From patient to Trustee

written by

Leukaemia Care, Charity

  • Kris Griffin

In February 2017, it was 10 years since I was diagnosed with chronic myeloid leukaemia (CML). I was 32 and I was supposed to be bulletproof. Instead, I faced up to my own mortality and reflected on life to that point. It was clear that the next stage of my life was going to be radically different so I focused on making the best of it. The CML wasn’t going to define me but it did become my superpower.

Treatment went well but it took three years to settle on dasatinib, after giving imatinib a good shot. It then took nine years to reach an undetectable status which I cling to knowing that it, like most things in this life, is pretty futile. I’ve had unbelievable highs and painful lows but I’ve carried on working full time in education and carrying my CML, like a badge of honour.

I’ve travelled across Europe talking to patient groups, spoken at events for most of the major blood cancer charities, raised money, written a successful blog, continually lobbied Westminster for better patient access to drugs and most importantly I became a dad to Luca in 2011. I’ve been at the forefront in engaging patients through social media and I still harbour a dream that patients will be able to DNA test at home and beam the results to their consultant.

I’ve met incredible people, not least the brilliant NHS staff who regularly keep me topped up with tablets and service this stuttering engine. There have been inspirational people, heartbreaking stories and moments of pride and determination. Above all, and as part of a bigger picture, I hope that I’ve made a difference. That’s the point, isn’t it? I felt, at

the start of my journey, I was strong enough to be able to carry this disease AND help others. Throughout my journey have been the people at Leukaemia CARE. The supporters and staff dedicate their lives to supporting blood cancer patients and I’m honoured to call them my friends.

Now I get to serve them as a trustee. For me, it’s a perfect storm. My commitments to ensuring that ALL blood cancer drugs are available to ALL patients and developing digital support networks can carry on. I’ll also continue to promote the importance of a healthy and peaceful mind. More importantly, I can support a charity that has a wonderful history and a very bright future.

This is the second stage of my blood cancer journey, I’m a better, richer person than I was before my diagnosis and I can’t wait to share, support and celebrate Leukaemia CARE and the people who make it great. You!

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