Community group marks World Sickle Cell Day -

The group dedicated the day to its founders and pioneering sickle cell advocates, reports Olivia Opara

A local sickle cell community peer to peer support group has commemorated World Sickle Cell Day with the reopening of the newly refurbished George Marsh Centre.

On Monday (June 19th), Sickle Cell Cause brought together its supporters and ‘warriors’ (those affected by sickle cell) to mark World Sickle Cell Day and celebrate the reopening of the George Marsh Sickle Cell and Thalassaemia Centre at St Ann’s Hospital. The theme of the day was ‘reclaiming our health and well-being’, during which the group shared advice about different ways one can be conscious of their health and well-being through healthy diets and holistic activities.

Sickle cell disease is an umbrella term for a group of genetic blood disorders affecting millions worldwide, most notably people of African and Caribbean descent. Sickle cell anaemia is the most serious form of the disease and is characterised by abnormal, crescent-shaped red blood cells.

The George Marsh Centre has been home to the Tottenham community group since 1987 after being founded by Dr George Marsh and Dr Neville Roy Clare as a purpose-built hub and drop in centre for sickle cell and thalassaemia patients. The centre is the first one to be dedicated to sickle cell in the country and in 2016 the battle over its usage saw the group being unable to access it for three years, reclaiming the space in 2019.

In 1985, haematologist consultant Dr Marsh started his campaign for the creation of the centre following the work of Dr Neville. Being a sickle cell patient himself, Dr Neville founded the Organisation of Sickle Cell Anaemia Research (OSCAR) in 1975 with the purpose of figuring out the cause and raising awareness of the disease. Dr Marsh died shortly before the centre was first opened and Dr Neville passed away in 2015.

Donnas, Dr Neville’s step-daughter said: “Neville was an incredible person and always believed in justice, truth and rights. He struggled with his illness but he never showed it to anyone.

“To know that everyone still speaks of him and will still speak of him goes to show an amazing journey for one person to have.”

A mentee of Dr Neville with sickle cell disease added: “He mentored a lot of us and he taught of the spirit of fighting. If it wasn’t for Dr Neville, we wouldn’t have this centre.”

Alongside Dr Marsh and Dr Neville was Nurse Martha Chitalu Mukupa, a senior specialist haematoligist nurse who tended to many within the group as well as advocating for patients with the disease. Nurse Mukupa had volunteered her time to support the local sickle cell community until her retirement. She later passed away in 2021.

Dorcas, Nurse Mukupa’s daughter, said: “My mum was everything and anything to everybody. Everybody was important to her and she was a well-rounded woman.

“Apart from her children, my mum always had a passion for caring and I want to say thank you [to the sickle cell community] for honouring mum.”

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