Zoe and Louise are ready to run!

The Great North Run, taking place this weekend, is the largest half marathon in the world. This year 22 people will be running for The AAT, including Louise, an Advanced Clinical Practitioner who specialises in aplastic anaemia and Paroxysmal Nocturnal Haemoglobinuria (PNH), and Zoe, who was diagnosed with aplastic anaemia in 2020 and now works in our Support team. I caught up with Zoe and Louise to find out how they work together to support patients, and how they’re feeling ahead of the run.  

Louise has been looking after patients with aplastic anaemia for 25 years. “When I qualified as a nurse in 2000, the very first patient I cared for on my first haematology shift was living with both Aplastic Anaemia and Paroxysmal Nocturnal Haemoglobinuria. I was involved with the team at Saint George's - that's when I first met The Aplastic Anaemia Trust! My career has followed on through to specialising in bone marrow failures.”  

Louise is now part of the specialist team at Leeds Teaching Hospital. Zoe remembers when she went through her ATG treatment there in 2021. “Louise was absolutely amazing. I'd had so many consultations with different clinicians. But when I met Louise, it was a totally different vibe. She had the experience of working with aplastic anaemia patients and, alongside that, she had the pastoral support and empathy - which I needed. She really did care and she knew the illness well and really supported me through all the challenges. She was my rock.” 

Zoe and Louise meet up at Maggie's. 

Louise blushes, “You’re going to make me emotional now.”  

“It's true, all true.” Zoe says, “And I hear that many, many times from other patients who come to visit me at Maggie's.” 

As she began to feel better after treatment, Zoe started volunteering for The Aplastic Anaemia Trust, and soon became an employee. Zoe now provides practical and emotional support to people all over the country who are diagnosed with the condition, or supporting a family member. She holds a regular AAT Coffee, Cake and Chat at the Maggie’s Centre in Leeds. “I feel like now it's my time to give back to the community.” 

A strong relationship

It’s lovely that in her role now, Zoe gets to be that sympathetic, knowledgeable person for other people being diagnosed. Louise agrees, “And it's not just that, you do so much more than that. Zoe is there for patients, keeping in constant communication and making sure they feel supported. ” 

Zoe explains how she at The AAT and Louise’s team in the hospital work closely together to support patients “We're on the same page, we both know what a priority it is to look after the patient's mental health and provide emotional support. And to support their families as well.” 

Louise agrees, “We’ve built a really strong relationship with the AAT, and their support is integral to the care we provide. Of course, there’s the clinical treatment, as well as mental health and supportive care, but what the AAT offers is something unique – the chance for patients to connect with someone who truly understands their experience. That’s something we, as a clinical team, can never quite replicate, and it’s absolutely vital. We have Maggie's, where people can get some space away from the clinical environment, but also [when Zoe is there] there’s someone that really understands why someone with aplastic anaemia is there and what they're going through. In a rare disease, that is quite unique, and has been phenomenal in changing how patients can experience that very difficult time.  And then there’s also the practical information. Accessing information around financial support as well as psychological support and just working as one big multidisciplinary team. It's been amazing.” 

Collaborating on research

I ask Louise why she signed up for the Great North Run, she says, “Do you want the real answer?” 

Zoe says, “You’re going to blame me now aren’t you?” 

“No, of course not! But you were definitely a big influence. I realised it was 25 years since I first started working in haematology, and I wanted to do something to mark that milestone. Along the way, I’ve had the privilege of caring for – and working alongside – so many people with Aplastic Anaemia. I always say it feels like a joint role, because when someone is diagnosed, they almost become part of the multidisciplinary team.

Louise on a training run

"That’s really why I signed up – because of people like Zoe. Years ago, I took part in the AAT triathlon, and the second time I did it, a patient joined me who had actually been in hospital during my first race. It’s people like that who have continued to inspire me.”

“I am very much not an athlete or a runner, so I have undertaken a training programme with an app - zero to half marathon in the last eight weeks! It's the encouragement and support from people that along the way that has made me stick with it and most of that has been patients.” 

"Don't put your trainers away"

Zoe's trainers - always ready to go!

Unlike Louise, Zoe is a runner, “I was a big part of the running community – I was on the committee, helped run the beginners groups. I gave up a lot of time to help new runners, and I loved running myself.

The Great North Run is less than a week away now – how are they feeling? “Well,” Says Zoe, “we found out today we've both been following the same training plan on the same app! And we are both now on a taper week, so happy days.” (The app is Runna and Zoe would recommend it!)

Does that mean a whole week off running? Louise says no, “I’ve got to go out tonight for a little one! But I literally started from a place of standing still, to where I'm at now. I'm feeling ready. Some days you find it challenging to even think about going out running. What keeps me going on those days is the support I've had, especially from patients.” Louise has just hit £1000 on her fundraising page and has had lots of support from patients she’s seen at Leeds and their families with many encouraging messages and “One patient’s family have sponsored me £111, their lucky number! I am very emotional and grateful.” 

“When someone is diagnosed with Aplastic Anaemia or another rare disease, it can be overwhelming and difficult to fully understand what’s happening. The impact is often life-changing – even simple daily activities, like getting out of bed, can become a challenge. Recognising this struggle is what motivated me to take on a half marathon. I believe that people diagnosed with a rare condition deserve the same level of support and access to information as those with more common illnesses. Rare diseases are just as impactful – and often just as serious.” 

Zoe chimes in, “A half marathon is a big challenge, a massive challenge. But aplastic anaemia is a lot more challenging. Having aplastic anaemia is really tough, really tough and sometimes it can just come out of the blue. So you're not prepared for it. We can give people somebody to talk to, someone who understands.”

The conversation descends into chatter about what they’ll wear and logistics for the day. Zoe is excited to run in the biggest Great North Run team that The AAT have ever had, 22 runners! “A wave of us, a wave of yellow out there on that course!” Louise says, “My t-shirt's blue, not yellow.” “A wave of yellow and blue!”  

Good luck to everyone running for The Aplastic Anaemia Trust this year. We are so grateful to you and proud of you all.  

This year’s Great North Run AAT runners, including Team Buffy from Buffy's Fund, have raised over £10,000!

You can sponsor Zoe or Louise here: