Today marks 1,368 days since my Aplastic Anaemia journey started. 1,368 days that have contained more life in them, both highs and lows, than the 22 years that proceeded them. My story varies little from the many patients I have had the pleasure of meeting since I have been involved with the Aplastic Anaemia Trust. Another unfortunate soul who suffered at the hands of this rare disease. I have written blogs for the trust before, shedding light on my journey and how my treatment impacted me. Thus, for the sake of brevity I will not exhaust this topic again.

In short, I was diagnosed in 2018 with severe Aplastic Anaemia, I would go on to have ATG in the September of that year and not one but two haploid identical bone marrow transplants in the summer of 2019. However, four years on I have been patched up and I am currently living a full and normal life. Thanks to the efforts of the NHS and the support of the AA Trust.

For the first time since diagnosis, I find myself looking forward instead of harking back to a life I felt had been robbed from me. I have switched careers to a role that fulfils me, I’ve started travelling again and my journey back to fitness is well underway. It is comforting to be writing one of those happy stories I spent so much time reading with hope (and envy) in those dark days. However, I like to deal in reality and not provide the unblemished fairy tales we often read in recovery stories.

For those reading who are undergoing treatment or have just been diagnosed my best advice is to be patient. You are entering a marathon not a sprint. Your journey will be hard and the task will seem insurmountable at times. Bring your friends and family close and prepare yourself for the physical and mental fight of your life. Life is set to pull you to the extremes. You will cry harder than you have before but you will also laugh harder too. Trust in the NHS and leverage the support the AA Trust can provide. They will see you through to the other side.

Having ‘passed through’ to the other side I also have some advice for those post treatment. Post treatment is rarely talked about as the medical job is done or at least in a support capacity. As a result, the NHS step back and more responsibility is placed back on to the shoulders of you, the patient. This can be daunting, I know, I certainly found it so. Questions such as: how do I re-join life? How can I go back after what I’ve experienced? Who will understand what I’ve been through? All valid questions that circulated through my mind. For a while after treatment I was scared and tormented. However, with the help of a councillor and a few brave steps I have since put these questions to bed. Ultimately you realise ‘I survived and now it’s time to thrive’!

For many a bone marrow transplant is the start of a new life, and the occasion is celebrated as a second birthday. For myself I think of everything post-transplant as a bonus. I have lived my allotted time and thanks to the miracle of modern medicine I have been granted extra. Since it was never mine in the first place I don’t intend to waste it.

In summation, for those at the treatment stage; be patient, draw strength from within and those around you. Remember all times come to pass and never to stay. For those post treatment, be bold and do not be held captive by fear. I genuinely feel lucky to have experienced what I have. For you can never appreciate life until you have nearly lost it.

Hi there I'm Ben.

I was diagnosed with aplastic anaemia when I was 22, and as a mixed-race male I had a more difficult transplant journey than some of the other people I met in hospital. 

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AA voices

AA voices is a collection of blogs in which people affected by aplastic anaemia share the stories they feel are important, in their own words. If you would like to tell your story here, please get in touch with Ellie, our Comms and Fundraising Manager, by emailing [email protected].