September is Sickle Cell Awareness month, and our Haemoglobinopathy team held an information stall at Queen’s Hospital on Tuesday 26 September.

Joining them on the stall were two of our patients, at different stages in their treatment journey, who have spoken about their experience of living with the inherited condition which affects red blood cells.

‘It was hard growing up as I couldn’t do what all my friends did, it affects all aspects of my life’

Mega Kagbare (above), 23, was diagnosed at nine months old, her sister, just a year younger than her, also has the disease.

Mega, of Ilford, said: “It was hard when I was younger, I couldn’t do things my friends did like swimming as I would get too cold and my joints would be painful.

“The pain affects every aspect of my life. I wanted to train to be an interior designer but I’ve had to focus on my health. I’m young and I want to go out and have fun but sometimes I feel too weak to get out of bed, it affects my appetite and I have to force myself to eat so I can take my medication.”

For Mega, who works for a care agency, raising awareness of the condition, and how it affects people differently, is important.

She added: “Some people expect me to be the same as others they know with sickle cell, but every patient is different. My sister has to have regular blood transfusions and I’ve had one in my whole life.

“Raising awareness is good as people need to understand the condition more. Sometimes people think I’m making excuses when I’m actually ill. I was also called names when I was younger, like ‘sickler’. Luckily my employer was understanding and made adjustments for me, but I was worried at first.”

There are two main treatments for sickle cell, Mega is on a drug called hydroxycarbamide. The other is a red cell exchange transfusion, where red blood cells affected by sickle cell are removed and replaced.

‘My son, 12, had never seen me in hospital until recently – I used to be in hospital all the time’

When Temitayo Aroyewun (above), 46, was recently admitted to hospital, unrelated to his sickle cell disease, it made him appreciate how far he’d come.

He said: “I used to be hospitalised regularly due to my sickle cell so when I was admitted it made me realise the difference – my son is 12 and he’d never seen me in hospital.

“I live a mostly ‘normal’ life now. There are a few things I wish I could do with the kids, but kids understand, and they adjust.”

It wasn’t such a positive picture for Temitayo, who also has a daughter, six, growing up in Africa. He was diagnosed at birth and doctors advised his mother he had to be extra careful, so he couldn’t join his friends swimming or playing football.

He added: “I was kept in a bubble but as I got older I started testing my boundaries, and got used to balancing manging my condition and living a life I enjoyed.”

Temitayo, an accountant, moved to the UK at 24 and found it difficult with work at first as employers struggled to understand his condition. Now, he tells them at the interview stage and has found things have improved over the years.

He added: “It’s better now, and I do think things have changed generally in relation to a bit more awareness about sickle cell, but not to the extent we would want.

“We need to go further, it’s not just about hospital staff and those living with the condition, it’s about reaching future families and patients. There is also still a stigma attached to it in Africa where some people will not want to seek help, so are living with complications which can be avoided.”

Over the years, Temitayo has had different treatments for his sickle cell, spending 10 years on hydroxycarbamide before switching to blood transfusions and now has red cell exchange transfusions.

Deo Boodoo is our lead nurse for sickle cell and thalassaemia . He said: “We look after around 350 children and 350 adults with sickle cell, so our area has a high prevalence.

“It predominantly affects those of African or Caribbean heritage, however, we are now seeing genes in other groups. It’s important to raise awareness among healthcare professionals as well as the general population. We need to reduce the health inequalities of sickle cell disease by ensuring people know more about this condition.

“It’s important to know if you are a carrier, especially if you are planning a family as parents can pass the sickle cell gene to their children in the same way they pass down genes for hair or eye colour. Those with sickle cell anaemia have inherited one sickle cell gene each from their mother and father, which is why pre-conceptual screening is important.

“We offer antenatal screening and woman at risk of having a baby with sickle cell disease can have a pre-natal diagnosis. At risk couples can also be referred to a fertility centre. This helps people make informed choices on the options available to them.

“We also want to ensure patients are looking after themselves, it’s important they attend their appointments so we can help avoid more serious complications, such as damage to bones and organs.”

Find out more about Sickle Cell disease.