World Sickle Cell Day: Here’s what people with sickle cell want you to know Sickle cell is the name for a group of inherited conditions that affect the red blood cells, and the most […]

Sickle cell is the name for a group of inherited conditions that affect the red blood cells, and the most serious type is called sickle cell anaemia.

It’s estimated that there are between 12,500 and 15,000 people with sickle cell in the UK.Today is World Sickle Cell Day, so i spoke to five people who live with the condition.

Here’s what they want you to know:

Jenica Leah from Birmingham said: “I’ve experienced ignorance from the general public, and from a traffic warden when using my disabled badge – which I had due to having my hip replaced, which I needed as a result of complications of my sickle cell. But according to some I didn’t look disabled. “This invisible condition is a daily struggle and a lifetime full of hurdles that we have to overcome.” The 29-year-old author said: “I’ve had work colleagues who were empathetic about my condition to start with but over time started to believe that I used my illness as an excuse to have sick days off work.” The i newsletter latest news and analysis Email address is invalid Email address is invalid Thank you for subscribing! Sorry, there was a problem with your subscription. “This is eventually what motivated me to become self employed and not have to work for anyone else or for any large establishment,” she said. Leah has written a book called My Friend Jen: A Little Different, which is based on her own experiences with the condition.

‘Don’t look at me like an addict’

Tito Oye, 22, a tenancy manager from South London said: “When I ask for morphine, please don’t look at me like an addict or insult me by suggest something weaker like paracetamol, just know my pain is so severe that morphine is all that will work.

“Take my word for it. I’ve been living with sickle cell my whole life and I know what my body needs when I’m in pain,”

“We need more black blood donors! So many of us are reliant on blood donations. There have been a couple instances where blood donations have literally saved my life.”

Oye, who has a blog where she documents her journey with the condition, added: “Please understand that our bodies won’t just accept any blood from any donor… there’s more to blood than O+, O-, A & B”.

‘Stop judging us by the way we look’ “You can not tell if someone has sickle cell if they have ‘yellow eyes’. I want people to scrap the idea that sickle cell patients are meant to look a certain way. Stop judging us by the way we look, it’s not nice,” said Diana, a marketing assistant from London. “It makes me angry when I hear such comments. It hurts. “It’s even more disgusting when you meet someone and they come to learn you have it and just thinks it’s okay to say ‘Oh, wow you don’t look like someone who has Sickle Cell’ I’m sorry? It’s very rude,” the 25-year-old added. ‘I’m unable to sleep because the pain is too excruciating’

32-year-old Gary Swaby said: “Stop thinking I’m addicted to drugs. Just because I ask for an additional shot of Oramorph during the night, it does not mean I’m an addict. Maybe I’m unable to sleep because the pain is too excruciating.

“What’s most disturbing to me is that this claim of addiction came from a hospital carer,” said the digital marketer and content writer from Luton, Bedfordshire.

Swaby also runs a subreddit that’s dedicated as a place for sufferers to connect and help each other through our struggles and spread any new information or medical breakthroughs.

‘A sickle cell crisis can occur anytime, anywhere’