After losing two daughters to mitochondrial disease, training in medicine helped me to make sense of this terrible condition, writes Silothabo Dliso, Physician Associate at Alder Hey Children's Hospital.
"My first daughter, Lindiwe, was born in 2013. A few weeks after she was born, she became very unwell and was diagnosed with mitochondrial disease. She passed away not long after that, when she was two months old. My second daughter, Sithabile, was born in 2014. Sadly she had the same diagnosis as her sister, and passed away when she was nine months old.
My daughters were treated at Birmingham Children's Hospital, and I was really impressed by the quality of care they received. Everyone was really nice and accommodating, and I felt like they really tried to do all they could. It's difficult to explain, but even after my daughters passed away, I never felt like I was let down by them. It was just really, really good care, basically what you want the NHS to be.
All that being said however, there was still a feeling of helplessness, not knowing what’s going on or what to do. The doctors do their best to try to explain things to you in simple terms, but because of how complicated the condition is, and how little information there is, it still doesn't make much sense. You kind of feel like you're just out there on your own, trying to figure out what the doctors are telling you. I didn't understand anything that was happening, which I felt made a terrible situation even worse. So I decided to learn more about it myself; that way, if I found myself in the same situation in the future, then at least I would be able to understand what is being said and what is actually happening.
Initially my idea was just to study some sort of biological science at a higher level, to get some understanding of the terminology and the concepts being discussed around mitochondrial disease. I enrolled onto an MSc programme in Biomedical Science at University of East London. While I was there, I got in contact with The Lily Foundation, and they put me in touch with Dr Ines Barbosa, a researcher working on the Lily Exome Sequencing Project at Guy's and St. Thomas' hospital. I was able to do a bit of work experience there, which meant I got to spend time in the lab and see how genetic analysis worked. This helped me understand more about the results from our own genetic investigations and what it meant going forward.
When I started my studies, I didn't expect to end up with this job. I wanted to end up working in research and healthcare, preferably around mitochondrial disease and give back in a way that would honour my daughters. The job I have now is a brand new role that didn't exist when I started my studies, so in a way things have kind of aligned for me.
My job is a real mix of things. I'm involved in various research studies, mostly as a sub-investigator, a role which can vary from study to study. My job also includes promoting and facilitating engagement in research activity among other Physician Associates and Junior Doctors in the trust. I also support students with their projects and help with some aspects of their training.
Working through the pandemic has not been a bad experience for me. I started off working at The Royal Liverpool Hospital, where we saw a lot of Covid patients especially in the department I was working in; this was made up of 2 wards, one of which was being used for confirmed Covid cases and the other being used for suspected Covid. Luckily though, we had a great team which was very supportive of each other. Clinical research was a change of pace, however we still felt the effects of the pandemic; for example many studies had to be paused, to allow for greater focus on Covid related studies .
I have not yet been involved in working with mitochondrial disease patients, but it is a goal I am still working towards. Here at Alder Hey there's no department for inherited metabolic disease as such, they get a specialist from Manchester to come in on a weekly basis. My hope is to link in with the specialist to possibly get involved in any research they may be doing as well as offering general support to that service."
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