12 December 2018 | Midlands
Charity that helps those with Sickle Cell Disorder improve their quality of life.
It’s the medical condition that affects thousands, yet few understand. Sickle Cell Disorder is an inherited condition that affects the blood and various organs of the body. The most serious type is called Sickle Cell Anaemia, and Birmingham has the second highest prevalence of people suffering from this condition - with around 1,500 sufferers and an estimate of over 20,000 who are carriers. Only London has more.
OSCAR Birmingham is the only charity in the city working to support families living with this life-limiting condition. It aims to help improve the quality of life for individuals - especially children and families - who are most affected by Sickle Cell and Thalassaemia. They work to address and challenge social exclusion for those facing difficulties arising due to their disorder, in addition to raising public awareness through education and training.
For the past three years, there’s not been a week that 38-year-old Ajay Dattani has not been in hospital. The step-father of three boys has an acute case of Sickle Cell Disorder. He has had multiple surgeries, including having his spleen removed. And he continues to suffer from pulmonary hypertension, and other chronic muscle and joint pain on a regular basis. He won’t admit it, but day-to-day life is tough.
Yet despite his health problems, Ajay endeavours to help others with the same condition. He is chairman of OSCAR, which this year has been chosen as a TSB Local Charity partner by the bank's branches in Great Hampton Street, Birmingham and Great Barr.
The charity helps hundreds of individuals in the local area. The disease mainly affects people of African, Caribbean, Middle Eastern, Eastern Mediterranean and Asian origin.
People with Sickle Cell produce unusually shaped red blood cells that can cause problems because they don't live as long as healthy blood cells, and they can become stuck in blood vessels. In extreme cases, children with Sickle Cell are 300 times more likely to experience a stroke and complications than others, while others can live a normal way of life.
Ajay now focuses on awareness, advocacy and social support for sufferers. "We are here to support individuals who experience challenges and disadvantages when living with Sickle Cell. For example, we provide mentoring support for young people and offer opportunities in social, educational workshops, and free days out and trips during the holiday period. This has helped to reduce feelings of loneliness and connect young people with others outside a hospital environment. This also provides much needed respite for parents. This type of chronic illness can affect the whole family including siblings, and have a huge impact on social mobility, mental health and well-being."
The charity were able to run a project called "Keeping Well with Sickle Cell" - a 12 month programme where sufferers came together for weekly coffee mornings and to chat. But more than that, Ajay and his team are trying to change the futures of sufferers through health, nutrition, community wellness and promote resilience. “It is much more important than that”, says Ajay. “We created a safe space for everyone to come together to share experiences, interests and learn new things. We would love to build on this work, to increase our reach, capacity and currently looking at ways of doing this.”