Sickle Cell Society

Sickle Cell Society

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Sickle Cell Society

About

The Sickle Cell Society is the only national charity in the UK that supports and represents people affected by sickle cell disease to improve their overall quality of life. We provide information, advice, advocacy, respite, support services, hold talks, patient education seminars and training.
Sickle Cell changes healthy red blood cells into a ‘sickle’ shape, making it difficult for them to move freely through the body or carry enough oxygen. Sickle Cell Disorder (SCD) affects 15,000 people in the UK (the most common genetic blood condition in England) and 380,000 people are carriers of the gene, Sickle Cell Trait (SCT). It can cause severe pain in any parts of the body known as a “sickle cell crisis” which could last for several days, weeks or months and result in frequent emergency hospitalisation. Moreover, people living with SCD can suffer from delayed growth, chronic fatigue, pulmonary hypertension, acute chest syndrome, strokes, brain damage, blindness, and permanent damage to internal organs and early mortality. It is also necessary to highlight that the condition is more prevalent in BAME communities; and especially people of Black African heritage (1 in 4 have SCD) and Black Caribbean (1 in 10).

The Sickle Cell Society was stablished in 1979 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. Nowadays, we are the only national charity in the UK that supports and represents people affected by SCD/SCT to improve their overall quality of life and we aim to empower and assist these individuals to realise their full economic and social potential.

We have provided high quality support for 40 years, and we are tirelessly working to keep that high standard in our services during these uncertain times of pandemic through the following actions:

- We have reinforced our Helpline & Information service being able to assist all the people contacting with individual questions about Covid19, health, housing, education and childcare advice.

- We work in tight collaboration with universities, hospitals and some health specialists in order to educate and raise awareness about sickle cell in the medical environment.
“My doctor would explain my sickle cell to me by saying, “imagine we’re all donuts and your filling is apricot and everyone else’s is raspberry”. That right there is where my complex of being different and abnormal came from, because that I understood, I was different from everyone else”. – Aliya Gladying,
(see her blog here: https://www.sicklecellsociety.org/human-first/)

- We have adapted our key services into an online and safe environment for our community. Live Sessions with medical staff, online trainings and workshops, virtual Annual Children Holidays and a long list of other activities to keep supporting our community and minimising social isolation.
"Thanks to all the organisers, Sickle Cell Society for the virtual holiday it was really beneficial, meaningful and to informative... It’s been a positive highlight to our summer as family. And meeting other families has been fun, encouraging and empowering… God bless you richly"


Your support will translate into more, and more specialised, support, advice, workshops and trainings, and a variety of activities for youth and children all over the UK. It will help to bring our community together in a safe online environment reducing loneliness and isolation.

On behalf of the many people living with sickle cell disorders and the SCS team,

Thank you.




Locations active United Kingdom Europe
This Cause is managed by SickleCellUK

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