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Supporting people with Sickle Cell Disease

by Sickle Cell Society in London, England, United Kingdom

£100

raised of £3,000 target

4

supporters
3% 18 days left
Flexible funding – this project will receive all pledges made by 7th October 2020 at 11:59pm

To support people with Sickle Cell Disease by providing support remotely via social media platforms, website and Helpline/online service

by Sickle Cell Society in London, England, United Kingdom

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).

 

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During these last 6 months, people living with Sickle Cell has been recommended to shield due to the high risk in case of infection with Covid19. The lack of information and uncertainty have resulted in an increase of the stress and anxiety levels for vulnerable patients and carers, especially those affected by poor housing, poverty and unemployment. Shielding has made loneliness more present than ever in the life of those affected for this condition, which is especially hard for those children and young people as peer support and friends is normally a big pillar in their lives.

“I get quite anxious that if anything happens to me, no one would know about it, for instance if I fall asleep and don't wake up, or slip whilst in the shower, if I have a crisis and I am unable to get out of bed then I will struggle, I ask my neighbours to knock my door every other day just to be sure I am ok” – Sickle cell patient

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" - Service user of our Digital Children Holidays

Life is slowly coming to normal for the gross of the population, but our community still needs to take extreme precautions, as the risk of several damages (or death) due to an infection is real and completely feasible. 

The condition already impacts on levels of oxygen being able to circulate, which would be further compromised if an individual were infected with COVID19. These issues will make difficult for them to go back to work, if they don't have the possibility of working remotely, and families may be less likely to seek medical support through fear of contracting the virus. People living with sickle cell will, moreover,  experience high rates of stress and anxiety due the uncertain times that are still ahead - we need to be there to provide additional emotional and peer support.

“My child is still struggling psychologically and still worried about leaving home 1st August and starting school in September. He had no educational support from his school regarding virtual learning promised by education secretary. It was so sad that he did not get help even from the local council when contacted.” – Carer of a child living with SCD

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.

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