Siliana Coelho filmed a video of herself writhing in pain because of her sickle cell – and the clip quickly went viral on Twitter.
The 21-year-old from Ealing, London filmed the clip in the middle of an agonising sickle cell crisis and the footage amassed 33,500 retweets, and reached 1.7 million people.
In the video you can see Siliana crying out and writhing with pain, which is common for people experiencing a sickle cell crisis. The disease makes her red blood cells form into abnormal shapes and get stuck, causing life-threatening blockages and complications.
I suffer from Sickle Cell and most people can’t even imagine what it feels or looks like. This is what I and others go through. Please share it and raise awareness for it, that‘s all I want🥺❤️ pic.twitter.com/NyqT3pCzBW
— Siliana (@ANGOLANCVNDY) October 6, 2019
She hopes that by putting her pain on the internet for everyone to see, she will inspire more black people to donate blood.
‘The pain of a normal sickle cell crisis is like your bones are being broken with hammers, it pulsates with you blood,’ says Siliana.
‘In that video I had the crisis in my chest, which is one of the worst. I felt burning and hot, and like my chest with being crushed with a pile of bricks. It was like being stabbed in the chest in time with your heartbeat.’
Siliana says that sickle cell effects every area of her life.
‘The hardest thing about living with sickle cell is that I’m constantly in pain,’ she explains.
‘I don’t have a moment to not feel anxious or paranoid. Because the condition is so unpredictable, you never know what to expect.’
At the moment, Siliana is suffering with hearing and vision problems as well as knee pain because of the lack of oxygen that impacts her vital organs.
‘It effects your mental state, you have no life,’ she says. ‘I’m constantly sick in hospital, constantly wondering when is the next time I’ll be back in hospital.
‘I’m unable to work because I can’t even hold a stable job. I’m in hospital every two weeks. Who will have me?
‘Then your love life. It’s hard to date. You always think: “Who is going to love me with this condition?” Because I’m constantly sick.
‘You don’t feel that confidence or even wanting to date when you’re so sick.’
Siliana, like many sickle cell patients, needs regular blood transfusions just to stay alive. She receives eight units of blood, every six weeks, at Hammersmith Hospital.
She said she shared the video to raise awareness of the disease and inspire more black to donate blood.
Blood needs to be well matched but the shortage of black blood donors makes it harder to find blood for black patients. In fact, NHS Blood and Transplant needs 40,000 new black blood donors over the next three years.
The shortage of black blood donors makes it harder to find the best matched blood for black patients, and that puts black people them at risk of serious transfusion reactions.
‘I am shocked and overwhelmed by the reaction to the video,’ says Siliana. ‘I never thought it would reach this many people. I wanted people to see what the pain is really like.
What is sickle cell?
Sickle cell is a disorder of the haemoglobin in the red blood cells.
Haemoglobin is the substance in red blood cells that is responsible for the colour of the cell and for carrying oxygen around the body.
People with sickle cell disorder are born with the condition, it is not contagious. It can only be inherited from both parents each having passed on the gene for sickle cell.
The main symptoms of sickle cell disorder are anaemia and episodes of severe pain. The pain occurs when the cells change shape after oxygen has been released. The red blood cells then stick together, causing blockages in the small blood vessels.
These painful episodes are referred to as sickle cell crisis. They are treated with strong painkillers such as morphine to control the pain.
Over time people with sickle cell can experience damage to organs such as the liver, kidney, lungs, heart and spleen. Death can also result from complications of the disorder.
Treatment of sickle cell mostly focuses on preventing and treating complications.
‘When you say you have sickle cell people say, “it’s such a shame”, but they don’t know how bad it really is. I wanted people to see what it looks like.’
She also wants to make sure people know just how much they are able to help people like her through the simple act of donating.
‘Plenty of people do not realise the power they hold with just donation their own blood,’ says Siliana. ‘There have been crucial times where I’ve needed blood. If no one donated, I don’t know where I would be.
‘It went viral overnight which was very shocking to me. I’ve tried to like and reply to the replies but there have been so many, about 1,500 replies. A lot of people were asking how they could help and I have said they can donate blood.
‘I feel there’s a lack of awareness about blood donation in the black community and we need to do more to help the community. We also need more billboards and posters, especially in the communities where there are more black people.’
Become a blood donor
Register today and book and appointment by calling 0300 123 23 23, downloading the GiveBloodNHS app, or visiting www.blood.co.uk
Siliana’s worst crisis came in February 2018. The sickle cells blocked the blood vessels in her lungs, damaging lung tissue, and cutting the oxygen flow.
She developed Acute Chest Syndrome – which is potentially fatal – and needed an emergency red cell exchange and three weeks in hospital.
‘I was struggling to breathe – I would definitely have died without blood donors,’ said Siliana. ‘That was the scariest one I have had.
‘Although the condition is often invisible, it affects us severely. Sickle cell should be categorised as a condition along with cancer and diabetes. Because it is terminal and fatal.
‘There needs to be more care, love and compassion towards it.’
Siliana is studying biomedical science at university and wants to work in a sickle cell unit when she graduates.
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source https://metro.co.uk/2019/10/14/woman-shared-viral-sickle-cell-video-makes-desperate-please-black-blood-donors-10914426/
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