How does it feel to get a disease you’ve never heard of? 

Diagnosis

On a Tuesday like any other, I went for a blood test at my local hospital. That evening, as I was clearing up after dinner, my GP called.

"Your blood counts are very worrying," he told me. And from the tone of his voice, I could tell that he really was very worried.

Within twenty minutes, an ambulance had pulled up outside my house. Blue lights flashing, I was rushed to the nearest A&E department.

After being prodded and questioned by a series of doctors, I breathed a sigh of relief when a porter wheeled me onto a ward and isolated me in a side room.

I had severe pancytopenia – so they transfused me with blood and platelets and took a biopsy of marrow from my pelvic bone. Two weeks later, a haematologist called to confirm the diagnosis.

"Jodie…" he began, in a consoling 'I bring bad news' voice – "you have aplastic anaemia."

Of course, I didn’t have a clue what he was talking about. Being a generalist haematologist, he also had a limited understanding of it.

He answered my questions, quoted some vague (and not entirely accurate) stats about the success of modern-day treatments, and told me about the importance of a positive mindset.

I cried softly as he spoke.

Assimilation

Over the coming weeks, I cried more than I'd cried in my entire life until that point.

I knew that something was wrong – but for the longest time, I couldn’t gain much clarity on the implications of having this disease.

I scoured Google for medical studies, which often revealed out-of-date and unnecessarily upsetting survival statistics.

I stayed away from AA social media groups, as I found them to be overly alarmist.

I grew bored of hearing from friends (many of whom thought that I was anaemic) that I "just need to eat some red meat" or asking if I could just "make a change in your diet … or take a supplement…".

Everyone was so well-meaning. But I hadn’t been diagnosed with something recognisable - like cancer or diabetes - and hardly anyone understood the severity or the mechanics of aplastic anaemia.

Treatment

When we found out that my sister wasn't a match for a transplant, the doctors were all set to put me on ATG.

I was initially told that there was a 65% chance of it being a success.

After further digging, I came to understand that 65% of patients had "a positive response from ATG". Some of those were partial responses, and some of those relapsed.

Try as I might, I couldn’t get a single doctor or nurse to give me a cut and dried explanation of the efficacy of ATG vs. stem cell transplant.

I felt utterly confused about the treatment options. And the more research I did into the topic, the muddier the decision seemed.

Eventually, ATG began to feel like too much of a flip-a-coin-and-see waiting game – so I insisted that the doctors search the registry for an unrelated donor.

Recovery

I underwent a stem cell transplant in December 2020 and have been recovering well since then.

As it turns out, aplastic anaemia has been one of the best things that has ever happened to me.

I wouldn’t wish it on anyone! But my journey has been one of self-discovery, which has tested me to the extreme and empowered me in the process.

I do just wish I’d known, back in May last year, what I know now about the disease. It would have avoided many months of frustration!

Hello! I am Jodie – dancer, writer, yogi, baker, wild-swimmer, traveller, wife, mama, and lover of life… and more recently, severe aplastic anaemia patient. These entries on the Aplastic Anaemia Trust website have been adapted from my personal blog, which you can find at faultymarrow.com. Read more from Jodie    Read more AA voices

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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].

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