As we all know, AA is a rare disease. Until 2019, I was a secondary school teacher so when I took a call from a parent of one of my students a few years after my own diagnosis, I was amazed to hear she had been diagnosed with the same thing!

A few years later again, I connected with a friend of a friend who had also joined the AA club. All of us had a stem cell transplant and are now living pretty normal lives.  We’ve supported each other throughout our diagnosis, treatment and recovery and I have no doubt that we will stay in touch - the shared experience that is AA will connect us forever. 

Aplastic Anaemia is a marathon not a sprint. Both the physical and mental strain of an AA diagnosis is not one that will pass quickly - treatment and recovery takes time, often years… it’s life changing! The mental impact is especially tough, and it's so important to seek help and support for the psychological side of the condition, as well as the physical symptoms. Being able to talk to someone you don't have to explain the condition to can make a really big difference. 

Meeting other people with aplastic anaemia by chance felt very unlikely - but if you're looking to find someone to talk to who has been on a similar journey to you, you can find them through The Aplastic Anaemia Trust.

Me on my first transplant birthday!

How can you connect with other people who have aplastic anaemia?

The Aplastic Anaemia Trust makes you feel like you’re part of a really special, supportive family. I’ve met people, built connections and friendships that I wouldn’t have without my AA diagnosis - the AAT really is the silver lining of the cloud that is AA! 

The Aplastic Anaemia Trust's patient support Facebook group has literally been a lifeline - on the days when you panic and no-one close to you quite understands what you’re worried about, you post on the group and people who know EXACTLY what you mean, reply with their own experience and instantly make you feel better.  

I’ve also been a member of Wellbeing Wednesdays since it started and it’s one of the highlights of my week! Lesley from Maggie's is such a great facilitator of the group and it’s a wonderful forum for like minded people to share their worries and also their joys - of which there are many!

Finally, I’ve accessed the Winter Wellbeing sessions - it’s great to see the AAT promoting a holistic approach to managing AA. I’ve found things like yoga and mindfulness have been a huge help to me since diagnosis and done much of it privately at a cost - to have this free from the AAT is such a bonus. 

If you have aplastic anaemia, feel free to follow me on Instagram too - and say hello!

Christmas with my family - 11 months post transplant.

Hello, I’m Lisa! I was diagnosed with aplastic anaemia in 2011. It's been a bumpy old road, but I've learned a lot about myself along the way.  

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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].