Sickle cell disease

Sickle cell campaigner brings his pain out of hiding

ALIDOR GASPAR, a grime artist known as A Star, has lived with sickle cell disease his whole life. To mark Sickle Cell Awareness Month he talks about growing up with the painful genetic condition, the resentment he felt towards his parents and how he is working to prevent the disorder from reaching future generations

Interview by Sarah Olowofoyeku

ALIDOR’S earliest memory of a

sickle cell crisis is from when he was aged five. ‘I remember being in tears, my body was hurting, I was rolling around,’ he says. ‘As a fiveyear-old, you just know your body is hurting but you don’t know why.’

Alidor Gaspar, from east London, is one of 15,000 people in the UK who have sickle cell disease. The condition is genetic and can occur in a baby born to two parents who have the gene that causes the disease – the sickle cell trait – or the disease itself.

The name of the condition refers to the sickle shape of red blood cells produced by people who have it. The sickle-shaped cells prevent normal red blood cells from carrying oxygen around the body, which causes episodes of severe pain, known as crises. Sickle cell disease has no cure and, as an adult, Alidor still has crises, which can be triggered by, among other things, exercising and changes in temperature.

‘Growing up with the disease was tough,’ says Alidor. ‘I was in and out of school. I always had to wear gloves and a scarf in normal weather. I loved playing football, but I had limits because I couldn’t play too much. Once when I was 12, I went on a bike ride with my friends, and when I came back home I had a crisis.

‘It was frustrating. It just felt like I was always being told “you can’t do this”, “you can’t do that”, but I wanted to live a normal young person’s life.’

As well as experiencing the disease himself, Alidor grew up watching a loved one in pain.

‘My mum has sickle cell disease,’ he reveals. ‘There were times when we would both be in hospital. I remember one time leaving my ward and going on another ward to see her, because she’d had a crisis too. That experience hasn’t left my mind even now.’

During his childhood, Alidor lived at home with just his mum. His dad had been sent to prison. But while serving his sentence his dad became a Christian. ‘After his release I’d see him once in a while, and he’d take me to church,’ Alidor says. ‘I remember going to Sunday school. If I had to tick an application form, I’d say I was a Christian, but I wasn’t living that way. I had a lot of questions.’

Some of those questions arose because a few fellow Christians would tell him that he should throw away his tablets and rely on faith to be healed. When he was not healed, they said it

was because he did not have enough faith. Their attitude confused him. He wondered why he remained unwell. But, after he got to know God for himself, he came to a different understanding. ‘It took me a while, but God restructured my thoughts about suffering,’ he says. ‘In the Gospels, the disciples ask Jesus why a man had been born blind. They wonder what his parents must have done for him to be like that. Jesus said the man’s blindness was nothing to do with anything his parents or he had done. ‘I have the mindset now that if I don’t get healed, I know one day I’ll be with God and I’ll be eternally healed. I hold on to that promise. Sickle cell is very painful, not just for me, but for everyone that goes through it with me, but I can trust in God, knowing that he’s got me.’ There have also been times when Alidor found himself feeling resentful Alidor in hospital during a severe crisis towards his parents. He recalls wondering why they had had a child. ‘Did they not understand that if someone with sickle cell disease and someone with sickle cell trait get together, there’s a huge chance of the child having sickle cell disease? Unfortunately, people in my parents’ generation didn’t have that conversation. That’s why I’m passionate about people The pain we having it now.’ To raise such awareness, Alidor is go through is starting a charity called Hidden Pain Society. He already goes into schools on the inside to give talks about his experiences and encourage blood donation – which is important for him and other people with sickle cell disease who receive regular blood transfusions. The charity will continue this work. He explains: ‘It’s called Hidden Pain Society because sickle cell is a pain that no one sees. You can’t really look at someone and say they’ve got the condition. The pain that we go through in

Sickle cell campaigner brings

a crisis is all on the inside.’

A few years ago, Alidor, who has been a gospel grime artist since the age of 20, performing under the name A Star, released a single with the NHS called ‘Hidden Pain’.

The single has raised awareness of the condition, and throughout his musical career, he has wanted to share his life and his faith with listeners. His overriding message, he says, ‘is trust in God and he will not leave you. Our sufferings are OK, as long as we are in his hands.’

Alidor Gaspar

Warm clothing event provides personal touch

CHILDREN received coats, shoes and other quality items of clothing from The Salvation Army in Gateshead during a three-day event ahead of the new school year, as part of the centre’s Every Child Warm initiative.

Families who may have been struggling financially were invited to attend the event and, to make their experience as enjoyable as possible, were offered a personal shopper to help them pick out items.

As well as clothing, The Salvation Army provided backpacks, pencil cases and stationery, offered lunches and snacks, and paid towards buses and taxis so that travel costs did not prevent people from going to the event.

Gateshead Salvation Army community manager Ann Humes said: ‘Every Child Warm is based on the idea that coats and shoes are the most expensive item that a parent has to buy. They may use a school uniform swap scheme, but finding the money for those items can be harder for parents with limited budgets. In Gateshead, where there are huge health inequalities due to poverty, we want to help make sure children are clothed properly for the winter.’

Salvation Army delivers aid after Pakistan flooding

THE Salvation Army is offering aid in Pakistan, where monsoon flooding has killed more than 1,200 people and destroyed a million houses.

Twelve hundred miles of road and 98 bridges were damaged or destroyed during one week, which has proved an obstacle to the delivery of aid and the ability of people to flee. Some areas had been so badly hit by the floods that many people had been unable to receive any support before The Salvation Army made contact.

The church and charity was able to take aid to one of the worstaffected provinces, Balochistan. Food packages and hygiene kits were distributed to 500 families that were stuck there.

In the northwestern province of Khyber Pakhtunkhwa, which is dealing with significant loss of life due to the flooding, some 600 families have received relief supplies from Salvation Army personnel. Support in the Sindh province, in the southeast of the country, has been focused on the Karachi slums and Dadu areas.

nCHURCH of England findings on prayer ‘show that

many people still long for that connection with something and someone beyond themselves’, says the Archbishop of York, the Most Rev Stephen Cottrell.

A Savanta ComRes survey of 2,037 adults commissioned by the church revealed that 48 per cent of people had prayed at some point in their lives and 28 per cent had Do you have a done so within the past month. story to share? It also showed that younger adults are more likely to pray than older

awarcry@salvationarmy.org.uk generations. The survey found that

@TheWarCryUK 32 per cent of 18 to 34-year-olds said they had prayed TheWarCryUK in the past month, compared to 25 per

Bsalvationarmy.org.uk/warcry cent of those aged 55 and over.