The Woman Redefining the Future of Sickle Cell Retinopathy: In Conversation with Dr. Evelyn Mensah

June’s Monday Muse is another special edition to celebrate Sickle Cell Awareness Day on 19^th June. This month, I sat down with Dr. Evelyn (Evie) Mensah – Consultant Ophthalmic Surgeon at London North West University Healthcare, President of the Ophthalmology Section of the Royal Society of Medicine, and founder of the Sickle Cell Retinopathy Network – a multidisciplinary research and advocacy network that connects clinicians, communities and policymakers across the UK, Africa and the Caribbean to eliminate vision loss from sickle cell disease.

Evie and her team lead and conduct research with affected communities, not simply on them. The people most impacted by sickle cell retinopathy have a seat at the table in shaping the science designed to protect them – and Evie is working relentlessly to make sure this happens.

More than 100 million people worldwide live with the Sickle Cell Trait and it disproportionately affects people of African and Caribbean heritage. What most people don’t know is that Sickle Cell Disease can silently affect your eyesight for years, sometimes decades, before symptoms appear. This specific complication is called sickle cell retinopathy, and it can result in a permanent loss of vision. It disproportionately affects young people, and currently, there are no global screening guidelines for detecting it.

Through the Sickle Cell Retinopathy Network, Evie and her team are working intently to change this, and it is her passion for change that inspired this conversation.

In this episode, Evie shares her journey into medicine and ophthalmology before we get into what sickle cell retinopathy does to your eyes, how she and her team are engaging communities to raise awareness, and what it will take to establish the kind of clinical guidelines that could save thousands of people from preventable blindness every year. We also get into her experience building the Sickle Cell Retinopathy Network – including the funding disparities that have kept sickle cell disease largely under-researched and under-funded for far too long.

As someone who’s not in the field of science or medicine, I was nervous going into this conversation. But Evie was brilliant, and so patient with every question I had. I learned so much, and I hope by the end of this conversation you leave feeling both inspired by her journey and equipped to take on your own eye health. The awareness gap around sickle cell retinopathy is not just a medical problem, it’s a community one. Better communication and awareness is one way to help tackle it, and I hope this conversation plays its part.

Get to know Evie:

Born: Newcastle, UK

Ethnicity: Ghanaian 🇬🇭

As a medical leader with over three decades of experience, what’s the best advice you’ve received? I think the best advice I’ve received is from myself which is to never give up. Don’t take no for an answer because I’ve had ‘no’ said to me at every stage of my career. Don’t listen to naysayers.

What’s one thing you wish more people knew about sickle cell or sickle cell retinopathy? People need to have their eyes examined at any age. If you go to Africa, there’ll be children as young as six or seven that have abnormal blood vessels growing at the back of their eyes. Yearly examinations are so important.

Song on rotation: Sundiata by Fuse ODG ft. Suli Breaks

** This article and video is for informational purposes only and is not a substitute for professional medical advice. Always consult a qualified healthcare provider regarding any health concerns, diagnoses, or treatment options.