Chukwumaihe Nzerue’s journey with Sickle Cell Disease

For Chukwumaihe Nzerue, the journey to living well with Sickle Cell Disease (SCD) has been one filled with ups and downs. For a start, he became aware of his condition relatively late: “I only discovered I had Sickle Cell when I was 11 or 12 - at the end of Year 7.” Chukwumaihe is now 24 but found that initially, his journey with Sickle Cell seemed to get harder rather than easier with time. In his early teens, he would leave school once or twice to go to the hospital for painkillers. But as he approached adulthood, “I was missing whole days of school as I started getting admitted to hospital. It’s been a very tiring journey to be honest.”?

Chukwumaihe lives in Birmingham, and was attending a pain management session at the Sickle Cell unit at Birmingham City Hospital in 2022 when he first heard about Sanius Health, via a leaflet handed to him by a nurse. He signed up, and a little later on was invited to a meetup of Sickle Cell patients in London. “The problem was I didn’t really know many other people with Sickle Cell, so I went along - and it was a really, really good time. It was so nice to meet other people like me, and learn about their experiences and how they were different to mine.” He was shocked to hear of other patients’ struggles to deal with hospitals; “It’s not to say I haven’t had bad experiences, but the unit at Birmingham is getting better and better at handling Sickle Cell and the good far outweighs the bad. So it was really helpful for me to hear that not everyone has as good an experience as that.”

?One such bad experience that Chukwumaihe recalls happened in 2022, when he realised he was in the initial stages of a pain crisis. “It's like a ‘spider-sense’, you just know that something's about to happen”, he said. It was a Friday night and he was alone in his flat, so around midnight he decided to call an ambulance. “But no ambulance came.” Initially, he thought it might be because he was in the flat, so moved himself with difficulty to the lobby, “where I waited until 4am.” Eventually he called his flatmate, who returned to the apartment and took Chukwumaihe to hospital in a taxi. He was lying in the emergency room at 6am when the ambulance finally called him back to let him know they were outside.

Such incidents are far from isolated in the SCD community, and Chukwumaihe took the big step of moving to a house that looked out over the hospital, such was its proximity, in order to avoid another incident of ineffectual ambulance response times. While he maintains that his experience of hospital care has been largely positive, taking such a course of action in order to avoid being left waiting and isolated again is indicative of the challenges facing the SCD community.

Chukwumaihe came away from the Sanius meetup with a deeper understanding of SCD and the obstacles facing his fellow patients, as well as a new community. His one regret? “I’m a very shy person, and I’m not used to talking to people. So I was very quiet on the day, and I wish I’d spoken more!”?

He is now on hydroxycarbamide, a medication which has reduced the number of pain crises he experiences. “It’s not the perfect drug, but I have noticed my quality of life is much better.” He credits being a member of the Sanius ecosystem as part of the reason behind this upturn in quality of life: “The medication doesn’t start working without a few months of consistent use, and I can be quite bad at sticking to it - so tracking when I’ve taken it on the app has really really helped.” Filling in his scores on the platform “has really made me a lot more health conscious - for example I’m much better at drinking water now and staying hydrated, which is so important for people with Sickle Cell.”?

Chukwumaihe ended the conversation by reflecting on his journey so far. “It’s been tough. I’ve had to make sacrifices - I love football but it’s difficult for me to play because my body can’t handle it.” But he firmly believes that it’s about “finding other avenues through which you can be happy. For example, I like video games, reading novels, doing hobbies that work for me and that I can do on my own or with friends.” Finding new ways to be happy as well as identifying with the SCD community, then, appears to hold the key to contentment and living well for him.

To learn more about Sanius Health, visit www.saniushealth.com