10 Facts about Sickle Cell Disorder (World Sickle Cell Day 2020)
The 19th June is World Sickle Cell Day – a day of raising awareness! World Sickle Cell Day is a United Nation’s recognised day to raise awareness of sickle cell at a national and international level. To celebrate this year, we have put together 10 facts about sickle cell disorder to help you learn more and share with friends and family.
Find out more about World Sickle Cell Day here:
MOBO choir sings for sickle cell disorder
MOBO choir sings for sickle cell disorder
A choir founded by MOBO and the NHS is promoting blood donation by singing at London's St Pancras station.
The singers have, or know someone with, sickle cell disorder.
Published 23 December 2017
Daniel De-Gale: Family's campaign for more donors ten years after his death | ITV News
The Choir sang at the memorial for Daniel De-Gale on behalf of ACLT and his parents Orin Lewis and Beverley De-Gale to raise awareness of the need for more Black Blood Donors to help those with Sickle Cell.
Daniel De-Gale died ten years ago at the age of 21. Diagnosed with Leukaemia when he was just six, he became the first black Briton to receive a bone marrow transplant from a donor who wasn't a relative. The Charity his family set up has since given hope to thousands of others from black and Asian communities by leading a national drive for more bone marrow donors. But there is still more work to be done. ACLT
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THE BATTLE
Our lives living with Sickle Cell
As members of the choir living with Sickle Cell, the pain they feel and deal with on a daily basis, is truly unbelievable.
Yet they choose to stand up and smile as they sing to raise awareness of the disorder and whilst many members of the choir are also blood donors.
Our collective aim is to be an inspiration to other's with Sickle Cell and just as importantly to say thank you to all those who Give Blood and keep them doing what they do.
Thank You
Clink Link: Give Blood
Calvin has an Oil Change
Meet Calvin Campbell a member of the choir and tenor, plus patient at UCLH as well as Board member of the Charity HCC. Film maker John Mister interviews Calvin as he has his regular blood exchange at University College Hospital Cancer Centre. Calvin tells us about his experience of living with Sickle Cell Disorder and how UCLH is helping him to stay out of hospital and in his words "living my best life" He also tells us about the formation of the B Positive Choir and their performances at The MOBO Awards and making it to the finals of Britain's Got Talent in 2018.
This video was released to mark World Sickle Cell Day 2020 for Haematology Cancer Care, of which Calvin sits on their board. We hope you'll enjoy this uplifting, moving and compelling short film.
Thank you so much to the amazing John Mister and fantastic Calvin Campbell
Thank you also to The MOBO Organisation and Fremantle Media / Simco Limited for permission to use clips from the choir's performances at MOBO Awards and Britain's Got Talent.
I've spent most of my life in hospital
It takes 128 people a year to keep me alive
Our beginning as a choir with some of those who live with Sickle Cell, talking about what it's like to live with the disorder and the impact on their lives, plus the need for more Black Blood Donation.
Click Link: Give Blood
Marsha's Story
Marsha Howe is a member of the choir who also has Sickle Cell and requires regular exchanges "Blood"
Marsha receives 6 units of Blood every 7 weeks, to remain healthy and out of hospital.
In her own words Marsha explains the impact having Sickle Cell and the Need for Blood has had on her life.
Click Link: Give Blood
"A total new lease of life"
September is Sickle Cell Awareness Month, during which we campaigned to highlight that people who are treated for sickle cell with regular blood transfusions need the support of more than100 donors every year.
Every year, 300+ babies are born with sickle cell. Marsha Howe is no stranger to the effects of the condition, having been diagnosed with it at a young age.
"As a child, I regularly missed school, often for weeks at a time, because I was so unwell due to my sickle cell," says Marsha.
A Blood transfusion is "a total pick-me-up," says Marsha
"Friends would often ask me why I was off, but I would always pretend it was something else as I didn’t want to appear different – I wanted to be the same as them."
Sickle cell is a life-threatening blood disorder that affects red blood cells. The sickle shape of these cells mean they can clump together, known as a 'crisis'.
A sickle cell crisis can cause extreme pain, tiredness, and other problems like stroke, blindness and organ failure. The pain can last for days or weeks.
Sickle cell is an inherited condition that mainly affects people with a Black African or Black Caribbean background. There are roughly 18,000 people currently living with sickle cell in the UK and demand for blood donations from hospitals is growing.
Click the Link: Marsha's Story