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Manchester Evening News
Manchester Evening News
National
Paul Britton

'As a child I couldn't play in the snow or have a cold drink, now I dream of going to the North Pole'

As her friends played happily in the snow as children, Gloria Adebisi Ademolu couldn't join in with them and had to stay indoors. She couldn't even sip a cold drink.

Diagnosed with sickle cell disease, the condition meant she couldn't do a lot of things others did growing up due to her weakened immune system making her highly susceptible to illness.

Gloria, now aged 26, has always held a love of winter and snow. And now she's told how she plans to revive a childhood dream of visiting the North Pole, all thanks to new NHS treatment she's receiving in Manchester. "For people with sickle cell, our immune system is really bad," said Gloria, who lives with her family in Manchester city centre. "I couldn't do a lot of things growing up.

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"Now I'm not as tired as I used to be and I don't feel as much pain - I can tell because I don't take as much pain medication as I used to. I have more energy to do things, I feel more energized to go out. I don't have to stay in bed all day.

"The best thing is now I can say, 'okay, now I can start living a life that I actually do want to live without fear of my condition triggering itself'."

Sickle cell disease is a life-long health condition that affects the red blood cells. Symptoms include anaemia and extreme fatigue, a risk of serious infections and 'sickle cell crises' - painful episodes that can last for days or even weeks. Sickle cell often shows itself in early childhood.

Gloria, who graduated from Manchester Metropolitan in July 2022, said she didn't show any noticeable signs until she turned three, when her family were living in Nigeria. Her crises started then, but her condition was only diagnosed after they moved to the UK when she was seven. When she was 14, and being treated, a guide at the Sickle Cell Centre in Manchester asked her to write down her dream for the future.

Gloria with her family on her graduation (Manchester University NHS FT)

"I sat there and thought - I really want to go to the North Pole. Even though it's cold. I want to be there - I want to see it physically," said Gloria.

Since starting the treatment - crizanlizumab - Gloria said she's noticed a major difference. She said: "The North Pole is absolutely freezing so it is a crazy idea, but maybe after a year or two of this treatment, I might be able to go. This treatment has given me the opportunities I wish I could have had years ago."

Gloria said she spent her childhood in bouts of severe pain and unable to enjoy playing outdoors. "I've lost a lot of friends because I wasn't able to meet up with them," she said. "It does affect your relationships with people because it seems like you just don’t want to see them.

"You can look at someone and just because they're smiling and laughing, it can seem like they're not in pain, but if you walked a day in my shoes, you'd know how it feels on the inside. Even if I'm meeting my friends outside, I'll go home if there are large crowds.

"During the pandemic, I stayed completely indoors. I always wished someone else was in the same boat. And then when I was eleven, my little brother was born, and he had sickle cell too."

Phillip, now aged 15, doesn't have as severe a condition as his older sister, but also has bouts of chronic pain. Both siblings were taken ill last year, Phillip with influenza and Gloria, who was rushed to A&E, turned to have sepsis.

Gloria and her brother, Phillip (Manchester University NHS FT)

Then in May 2022, Gloria started a new treatment at Manchester Royal Infirmary that has significantly improved her quality of life - and allowed her to rekindle her long-cherished dream. The new treatment, crizanlizumab, is delivered by a transfusion drip and binds to a protein in the blood cells. It prevents the restriction of blood and oxygen supply that leads to a sickle cell crisis.

She said: "I'm one of those people who's always open to trying new things to help myself and others it may benefit, like my brother, so I was excited to get started. I was just like - let's do it! I didn't even think twice."

Dr Joseph Sharif, Haematology Consultant and Lead for Sickle Cell at Manchester Royal Infirmary, said: "People with sickle cell are more susceptible to infections such as flu, pneumonia and meningitis. Effective treatment and prevention of infection is an essential aspect of sickle cell care.

"I am very pleased that we are able to offer this treatment to our patients with sickle cell at Manchester Royal Infirmary, and the feedback from patients so far, including Gloria, has been very positive. Crizanlizumab has been shown to reduce the frequency of acute sickle pain crises. Sickle pain crises can be severe and unpredictable and often result in hospital admission and patients can become very unwell.

Manchester Royal Infirmary (Vincent Cole - Manchester Evening News)

"Many of the patients currently receiving this treatment in the North West currently live in the Manchester area, but as the haemoglobinopathy coordinating centre for the region, we want to ensure all patients across our catchment area have equal access to this treatment."

Since starting the treatment, Gloria said she has noticed a major difference and of her North Pole dream said: "I want to see what it's like in the day, and in the night. I love looking at the stars in Manchester but in the North, I'll be able to see so much more. It's pure nature.

"I want to see somewhere human beings haven't touched. An unpolluted place that I'll remember when I’m old. This treatment has given me the opportunities I wish I could have had years ago."

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