This was during my constant hospital admissions. I was no longer able to work or study which I’ve mentioned deeply affected me.

I felt too young to be disabled I didn’t want to be called it, I rejected that title, I guess in some ways my body accepted that title, my body deserved that title at the time. I just did not want to accept it because I felt embarrassed about it.

For a long time I’ve felt trapped by my body held back, held down, held hostage. My body was my plague not my protection it destroyed me, it destroyed itself.

Dealing with a physical condition is challenging to say the least. It made me have to use my mind because that was all I had that was the only part of me that was somewhat free, it was the only escape I had, I had to try and switch my mind off of my pain and bring my focus onto something else, which is extremely difficult and isn’t always achievable.

Learning to do my makeup was a huge distraction for me and the more I done it the more I grew a passion for it, I’ve never wanted to be a makeup artist though I just wanted to be able to do my own makeup.

Now when I’m in pain if it’s bearable I will do my makeup as it distracts me and cheers me up. I am in pain daily and I mean daily I’m not saying that figuratively I mean that literally, whether it’s sicklecell pain or fibromyalgia pain it’s daily, so having something that distracts me and brings me joy is so necessary, it’s apart of self care doing something just for you because it makes you happy and isn’t hurting anyone else and we need more of that.

My #sicklecellfamily I continue to pray for your health, happiness, hope and strength Alhumdulilah

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Our volunteer, Rachel Simpson, exploring the exhibition deeper by using the QR codes

The Sickle Cell Society launches 2021 with an exploratory exhibition on the history of Sickle Cell Anaemia, the NHS and the Black British community with Black Cultural Archives (BCA).

Our Journey, Our Story: History and Memory of Sickle Cell Anaemia in Britain 1950 – 2020, which opens in person on Friday 21 May, unveils the campaign to make sure that sickle cell was recognised by medical professionals and how treatment has evolved unveils the campaign to make sure that sickle cell was recognised by medical professionals and how treatment has evolved.

For the first time, the exhibition collects the testimonies and experiences of people living with sickle cell; photographs and archives about the history of sickle cell campaigning; and original art by Black artists.

Sickle cell affects approximately 15,000 people in the UK. People with sickle cell can experience pain, strokes, fatigue and many other symptoms, and it can be life-threatening. Sickle cell was misunderstood by doctors and underfunded for decades.

You and I, 2021 printed images on archival paper.

Against the backdrop of British Black Power, the first black MPs in Parliament, and anti-racist campaigning; patients, families, nurses and doctors campaigned for equitable treatment in the NHS, and better awareness of the condition. As an illness that was an object of fascination for geneticists and anthropologists as a marker of ‘race’, this exhibition seeks to turn that on its head and present the condition as it is seen, understood and managed by the people affected by it.

“This is such an important exhibition telling a story not often shared beyond the Black communities, even though sickle cell affects other racial groups. We’re proud to work alongside the Sickle Cell Society to raise awareness on this important subject.” – BCA Managing Director, Arike Oke

Our Journey, Our Story: History and Memory of Sickle Cell Anaemia in Britain 1950 – 2020 is available:

• In person at the Black Cultural Archives:
  • Thursdays, Fridays, and Saturdays between 11:30 am and 5 pm
  • 1 Windrush Square, Brixton, London, SW2 1EF (click here for visitor details)

• Online at: www.bcaexhibits.org/exhibits/our-journey/ 

The exhibition closes on the 30th July 2021

Visitor Book

If you have enjoyed this exhibition, please consider signing the visitor book and leaving a comment: https://www.surveymonkey.co.uk/r/9WR8PCR

About the Sickle Cell Society
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.

About the Black Cultural Archives
Black Cultural Archives is the home of Black British History, conceived in 1981 as a monument to hold space for the histories of people from across the African diaspora in British culture and history. We use our mission to collect, preserve and celebrate the histories of people of African and Caribbean descent in the UK and to inspire and give strength to individuals, communities and society. Our HQ is 1 Windrush Square in Brixton, London. At our HQ we run a series of gallery exhibitions, educational programmes and public engagement events. We provide free access to our unique set of archives, museum objects and reference library.

About Sickle Cell Disorder
Sickle cell disorder is a long term inherited condition that causes excruciating pain, can be life threatening, causes multiple problems such as specific severe infections, strokes, chronic fatigue, delayed growth and progressive tissue and organ damage. People are often admitted to hospital when they have a sickle cell crisis, given strong pain killers such as morphine to control the pain, intravenous therapy and antibiotics. Some require regular blood transfusions to help reduce the number of sickle cell crisis as well as prevent life-threatening problems.

• SCD is inherited from both parents; sickle cell trait is inherited from one parent.
• SCD mostly, but not exclusively affects people from African and Caribbean backgrounds
• 1 in 76 babies born in the UK carry sickle cell trait.
• Approximately 15,000 people in the UK have sickle cell disorder.
• Approximately 270 babies with SCD are born in the UK every year.
• A simple blood test will tell whether you have sickle cell trait or the disorder
• Children with SCD are at increased risk for stroke, the risk is highest between the ages of 2 and 16.
• Episodes of pain may occur in sickle cell disorder and are generally referred to as a crisis

For more information, please contact Alinta Sara: alinta.sara@sicklecellsociety.org

The post Exhibition: History and Memory of Sickle Cell Anaemia in Britain 1950 – 2020 appeared first on Sickle Cell Society.

The post In Conversation with Professor Dame Elizabeth Anionwu appeared first on Sickle Cell Society.

The Sickle Cell Society launches 2021 with an exploratory exhibition on the history of sickle cell, the NHS and the Black British community with Black Cultural Archives (BCA).

Our Journey, Our Story: History and Memory of Sickle Cell Anaemia in Britain 1950 – 2020 (launched on the BCA website on Monday 25th January) unveils the campaign to make sure that sickle cell was recognised by medical professionals and how treatment has evolved.

For the first time, the exhibition collects the testimonies and experiences of people living with sickle cell; photographs and archives about the history of sickle cell campaigning; and original art by Black artists.

Sickle cell affects approximately 15,000 people in the UK. People with sickle cell can experience pain, strokes, fatigue and many other symptoms, and it can be life-threatening. Sickle cell was misunderstood by doctors and underfunded for decades.

Against the backdrop of British Black Power, the first black MPs in Parliament, and anti-racist campaigning; patients, families, nurses and doctors campaigned for equitable treatment in the NHS, and better awareness of the condition. As an illness that was an object of fascination for geneticists and anthropologists as a marker of ‘race’, this exhibition seeks to turn that on its head and present the condition as it is seen, understood and managed by the people affected by it.

Our Journey, Our Story: History and Memory of Sickle Cell Anaemia in Britain 1950 – 2020 is available online at: www.bcaexhibits.org/exhibits/our-journey/ 

The Sickle Cell Society is delighted to be holding this important and first-of-its-kind exhibition at the Black Cultural Archive. It pays tributes to patients, families, campaigners, activists, and clinicians who played an important role in working to improve care for all people who live with sickle cell anaemia. We must never forget the contribution they have made over the decades and this exhibition aims to document and share all that has been achieved. – John James OBE

For more information, please contact Alinta Sara: alinta.sara@sicklecellsociety.org

About the Sickle Cell Society

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.

About the Black Cultural Archives

Black Cultural Archives is the home of Black British History, conceived in 1981 as a monument to hold space for the histories of people from across the African diaspora in British culture and history. We use our mission to collect, preserve and celebrate the histories of people of African and Caribbean descent in the UK and to inspire and give strength to individuals, communities and society. Our HQ is 1 Windrush Square in Brixton, London. At our HQ we run a series of gallery exhibitions, educational programmes and public engagement events. We provide free access to our unique set of archives, museum objects and reference library.

About Sickle Cell Disorder

Sickle cell disorder is a long term inherited condition that causes excruciating pain, can be life threatening, causes multiple problems such as specific severe infections, strokes, chronic fatigue, delayed growth and progressive tissue and organ damage. People are often admitted to hospital when they have a sickle cell crisis, given strong pain killers such as morphine to control the pain, intravenous therapy and antibiotics.  Some require regular blood transfusions to help reduce the number of sickle cell crisis as well as prevent life-threatening problems.

• SCD is inherited from both parents; sickle cell trait is inherited from one parent.
• SCD mostly, but not exclusively affects people from African and Caribbean backgrounds
• 1 in 76 babies born in the UK carry sickle cell trait.
• Approximately 15,000 people in the UK have sickle cell disorder.
• Approximately 270 babies with SCD are born in the UK every year.
• A simple blood test will tell whether you have sickle cell trait or the disorder
• Children with SCD are at increased risk for stroke, the risk is highest between the ages of 2 and 16.
• Episodes of pain may occur in sickle cell disorder and are generally referred to as a crisis

The post Digital Exhibition Launch appeared first on Sickle Cell Society.

We still have spaces left for our 15-18 Masterclass. Register today!

Our Journey, Our Story is collaborating with Chocolate Films to deliver two free online filmmaking masterclass courses for participants aged 15-18 years old with sickle cell.

Over four weeks, participants will be taken through the process of creating their own documentary ‘Day in the Life’ film about living with sickle cell disorder (SCD) on their mobile phones.

Join us for this free and fun masterclass on Zoom. Each course will feature 4 x 1 hr Masterclasses delivered over Zoom, with tasks for the participants to complete in their own time between sessions.

• Saturday 13th Feb
  • 11:30 /12:30 : 15-18 years old with SCD
• Saturday 20th Feb
  • 11:30 /12:30 : 15-18 years old with SCD
• Saturday 27th Feb
  • 11:30 /12:30 : 15-18 years old with SCD
• Saturday 6th March
  • 11:30 /12:30 : 15-18 years old with SCD

To apply please use this form (no previous experience required just enthusiasm): https://docs.google.com/forms/d/e/1FAIpQLSfau-xkhN7vojPBxgAMe2tWbkHpW6bqOas7JyyTmFQqNJHMPw/viewform?usp=sf_link

Spaces are limited, so apply soon!

About Chocolate Films

Chocolate Films aims to transform lives through film, by creating high-impact documentaries, promotional videos and event films for our clients and by empowering people through filmmaking workshops.

The post Filmmaking Masterclass appeared first on Sickle Cell Society.

Imperial As One and the Sickle Cell Society are pleased to invite you to the webinar Sickle Cell Disorders (SCD) in the UK (History, Culture and Sciences). In the UK, SCD predominantly affects people of Black African and Caribbean heritage and it is now the fastest-growing genetic condition. Come and join us for this interactive and multidisciplinary seminar.

We will be joined by a range of speakers from academia, the charity sector as well as the sickle cell community.

Wednesday 16th December
12-13:30 pm
via Zoom webinar

Click here to register on Eventbrite

Our Journey, Our Story is the Sickle Cell Society’s new project funded by the Heritage Lottery Fund. Through oral histories, it will explore the history and memory of sickle cell disorders in the UK since the Windrush’s arrival. SCD predominantly affects people of Black African and Caribbean heritage and is now the UK’s fastest-growing genetic condition – changes over the last 70 years have been immense. Although SCD has been medically recognised as a health condition for over a century, awareness of it remains relatively low and people with SCD are still facing stigma.

Launched in 2005, Imperial As One (IAO) is an advisory group made up of Black, Asian and Minority Ethnic (BAME) staff. This group helps set priorities and advises the College, particularly by examining custom and practice, the traditions of the College, and identifying how these impact on staff. Imperial As One works to support and promote an inclusive workplace culture of respect, opportunity, unity, transparency, equality, and will continually tackle and manage issues of racism, discrimination, fear, and prejudice. This was recognised in 2008 with IAO winning the Rector’s Award for Equality Excellence.

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Join us for an interactive workshop about the history of blood donation campaigning and its importance in sickle cell disorders treatment.

About this Event
Sickle cell disorder predominantly affects people of Black African and Caribbean heritage and is now the UK’s fastest-growing genetic condition. Come and join us for an interactive workshop about the history of blood donation campaigning and its importance in sickle cell disorders treatment.

We will be joined by a range of speakers from the sickle cell community including Professor Dame Elizabeth Nneka Anionwu, UK’s first sickle cell nurse specialist.

Saturday 20th June 2-3:30 pm via Zoom

Click here to register

Our Journey, Our Story is the Sickle Cell Society’s new project funded by the Heritage Lottery Fund. Through oral histories, it will explore the history and memory of sickle cell disorders (SCD) in the UK since the Windrush’s arrival. SCD predominantly affects people of Black African and Caribbean heritage and is now the UK’s fastest-growing genetic condition – changes over the last 70 years have been immense. Although SCD has been medically recognised as a health condition for over a century, awareness of it remains relatively low and people with SCD are still facing stigma.

South London Gives aims to increase regular blood donation in people of black heritage.The blood donation service needs to recruit 40,000 new black and mixed race donors to treat sickle cell patients. Sickle cell patients needing regular blood transfusions benefit from more precisely matched blood and this is most likely to come from someone with the same ethnicity. South London Gives’ team of volunteers raise awareness of the need for more black donors, breakdown some of the myths, preconceptions and fears that exist around the topic and encourage people to sign up to give blood in their communities.

Funded by the Heritage Lottery Fund and NHS Blood and Transplant

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