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.
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.
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