I was diagnosed with aplastic anaemia in June 2011, completely out of the blue. I had a small pin prick rash on both feet (which I later found out were petechiae), went for some routine blood tests as a precaution and was admitted to hospital the next day.

Less than 2 weeks before diagnosis in May 2011

In hindsight, I'd also been feeling very tired and breathless but just put this down to overwork and being unfit. I had rabbit ATG in July 2011 and again in April 2012, which got me into remission. After coming off Ciclosporin in 2018, I relapsed. All attempts to get me back into remission failed so I had a MUD (matched unrelated donor) stem cell transplant in September 2020. This also failed so I had a second transplant from a different donor in January 2021 which is currently working.

It’s been a long and bumpy old road, but I feel very blessed to be where I am today. 

Taking the lead in my own care

I have found that people mistake aplastic anaemia for standard anaemia - or iron deficiency anaemia. This means that in day to day life, there is a misconception about the seriousness of the condition.

I've even found that it's the same in my local hospital and primary care setting - whilst my local consultant was amazing, the wider team was far more used to dealing with blood cancers and weren’t always sure on what to do in certain situations. I’ve been really lucky to have been treated at two amazing regional specialist centres at St James’, Leeds and Freeman, Newcastle but even there, blood cancer is the biggie in haematology. 

I’ve really had to take a lead in my own care - I’ve become an expert in AA and made sure I’ve spent time making people around me, be it in employment or medical settings, fully understand what it is we’re dealing with and how best to support me in managing the symptoms, treatment and recovery.  

Right from the onset of my diagnosis, I joined the AAT's mailing list so I would get updates from the buddy list and regular magazine with news and updates. The AAT webinars with people like Dr Austin & Professor Hillmen are just so helpful - especially in recent years with the increased worry of the pandemic. To have such leading experts address us as a group and how best we can help ourselves, is just invaluable. 

I’ve accessed the Winter Wellbeing programme - 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! 

My advice to others: be open and honest

Not only with others, but with yourself, too! 

When I was diagnosed, I was in denial and wouldn’t even tell people the name of my condition because I knew they’d seek it out on ‘Dr Google’ and immediately see the words ‘potentially fatal’.

I thought people would think I was weak, feel sorry for me and look at me with pity. At the time I was young, independent and flying up the career ladder - I thought I was invincible. AA proved me wrong, really wrong and brought me down to earth with a huge BANG! Nonetheless, I spent years trying to fight it, keep up with my peers and get back to ‘normal’ as quickly as possible. I battled with myself internally for years which created a huge amount of mental pressure 

When I relapsed seven years after my initial diagnosis, I flipped my approach - it was the only way. I openly talked about my condition and put my health first - I took a career break and subsequently changed my career path to one that better suited my condition. I rode the waves that AA sent my way - one day, sometimes even one hour at a time. 

The realisation finally dawned that AA and the ability to handle what it threw at me was in fact, not a weakness, but a strength. And I could use that strength to recover and ultimately help others.

One of the best things I ever did as a result of my AA was my blog on Instagram (@my_plan_c) - I started it just before my first transplant and it’s been a huge source of support not only to me, but to others too.

You can’t get more open and honest than sharing your story with the world (well anyone that’s interested!) - AA or any other rare disease is not something to be ashamed of, I just wish I’d realised that sooner. 

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.   Read more from Lisa    Read more AA voicesFollow Lisa on Instagram

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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].