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10 Facts about Sickle Cell Disorder (World Sickle Cell Day 2020)

10 Facts about Sickle Cell Disorder (World Sickle Cell Day 2020)

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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: 

Sickle Cell Society UK

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

BBC News  Health

Daniel De-Gale: Family's campaign for more donors ten years after his death | ITV News

Daniel De-Gale: Family's campaign for more donors ten years after his death | ITV News

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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

 

• Subscribe to ITV News on YouTube: http://bit.ly/2lOHmNj • Get breaking news and more stories at http://www.itv.com/news

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

Calvin has an Oil Change

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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

 

#loveHCC #HCCfamily

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

Marsha Howe an alto in B Positive Choir

"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  

 

Miai & Ama - Sickle cell disease

Miai & Ama - Sickle cell disease

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Miai & Ama – Sickle Cell Disease – A video by NHS Give Blood

Miai and Ama talk about sickle cell disease and help raise awareness of blood donation.

Miai has sickle cell disease and receives blood transfusions. Over 18,000 people in the U.K. are living with sickle cell SS.

Click Link: Miai and Ama

Liai and her motther Lisa.jpg

Miai and her mother Lisa

Hi, I’m Miai, I am 15 years old and just started my GCSE’s (wow, where has the time gone!) and I enjoy musicals (especially Hamiliton), gaming, movies, reading, creative writing, making videos and I’m a Sickle Cell Warrior.

As a young person living in a modern world, life presents many challenges e.g. social pressures, mental health, reliance on technology/social media, puberty, academic strains but I also have the added pressure of juggling my sickle cell with daily medications, doctors’ appointments, and the avoidance of triggers (infections, temperature fluctuations, hydration, and stress) Being unwell is frustrating as I’m forced to slow down while convalescing and it feels like I’m missing out on ‘all the fun’ at times but thankfully I have a very supportive network of family and friends to keep my spirits up.

When I was younger, I dedicated more of my time to spreading awareness of sickle cell and encouraging people from the global majority to give blood by working with amazing charities and organisations e.g. The Sickle Cell Society, ACLT and others, and including working with NHS Blood and Transplant over the years to encourage more people to become blood donors to save lives.

But as I have gotten older and I wanted to focus less on my daily health battles and more on my achievements in life, to inspire others and young people with sickle cell to always aim high, despite the challenges they face.


I’ve had 6 unplanned blood transfusions (top ups) over the years and now I’m considering joining the Partial Exchange Transfusion (PET) program, a procedure that will replace my sickled blood with non-sickled blood over repeated intervals. I am truly grateful to the donors for their gift of life, they are real life incognito super (s)heroes, who should be awarded medals for their generosity, without them I would not be able to lead the full and varied life that I have been blessed with.

Having sickle cell has made me more determined than ever to follow my dreams. I’m a professional actress and can be seen on BBC iPlayerDeath in Paradise” as Officer Marlon Pryce’s little sister Jocelyn and as Ruby in a children’s series called “Andy and the Band” I’m also on Netflix’s “Zero Chill” as Ella and a crime drama called “You Don’t Know Me

As I get older, I want to continue acting and become a published author and content creator.  I know with my continued determination and support from family and friends I am capable of achieving all my goals and much more in life.

https://www.blood.co.uk/news-and-campaigns/the-donor/humans-of-blood-donation/lisa-phillip/

The Sickle Cell Society

About The Sickle Cell Society

       The Sickle Cell Society Believes That Individuals 

With Sickle Cell Disorder Have The Right To Quality Care

The Sickle Cell Society is the only national charity in the UK that supports and represents people affected by a sickle cell disorder to improve their overall quality of life.

First set up as a registered charity in 1979, the Sickle Cell Society has been working alongside health care professionals, parents, and people living with sickle cell to raise awareness of the disorder. The Society’s aim is to support those living with sickle cell, empowering them to achieve their full potential.

The Sickle Cell Society believes that individuals with sickle cell have the right to quality care. This can only be achieved if funding is made available to educate health carers and other professionals about the condition. The Society aims to provide this.

The Society does not discriminate between the types of sickle cell disorders or the ethnic groups concerned. Both sexes are equally affected, and should have equal access to support and services within a confidential and sensitive environment. We respect the views of every patient.

We have a network of committed volunteers, who play an important part in running the charity, providing administrative backup, and helping with fund-raising activities.

Donations from the public and fundraising activities are also part of our life support. Without them, we would be unable to finance the essential research and educational projects and we would be unable to offer children a much-needed holiday. The Society benefits from the support of a wide range of individuals and organisations nationally, who together play a vital role in its success.

                       History

The Sickle Cell Society was first set up as a registered charity in 1979. It was formed by a group of patients, parents and health professionals who were all concerned about the lack of understanding and the inadequacy of treatment for people living with sickle cell disorders.

The Society is managed by a committee of 10 volunteers elected at the Annual General Meeting, and they meet each month. The Management Committee is accountable to the members and works with a small core of paid staff to further the Society’s aims by providing special services and welfare schemes for sickle cell sufferers.

Our vision is to be the most successful sickle cell organisation nationally with a wide network of well-informed, committed and active supporters working at local, national and international levels.

We will be better able to empower and assist people with sickle cell disorders to achieve their                                                       full economic and social potential.

We hope that this page provides you with a better understanding of the work which the Society does, because it is only by working together that we can achieve this vision.

If you have a Sickle Cell disorder, then join us, use our services, and let us help you overcome some of the difficulties the illness causes. If you haven’t then join our network of supporters – help us to raise awareness about the disease; help us to raise vital funds for research and education for sickle cell sufferers. By joining together, we can all turn a sickle into a smile!

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