The story of an organisation committed to care and support
By Chrissy Wells & Mary Peter
Organisation for Sickle Cell Anaemia Research (OSCAR) Nottingham is a local charity that is devoted to raising awareness, support and guidance for people with Sickle Cell Disorder. Although the name implies that we carry out research, this is not the case although we can support research done by others
Sickle Cell Disorder is an inherited genetic condition in which there is an abnormality in the haemoglobin, the oxygen-carrying protein found in red blood cells. It is not infectious, but it is incurable. Sickle cell affects and blights the lives of many thousands of people across the world, especially Africa, the Caribbean and the Mediterranean. People with Sickle Cell can either have the full blown Disorder or carry the Trait. Children of Sickle Cell sufferers can sometimes inherit the disease. (See image) Sickle Cell causes many health problems because some of the red blood cells form a sickle shape after they have deposited their oxygen in the tissues and organs, and they cannot pass through the small blood vessels, thus blocking them and preventing oxygen from reaching vital organs and the joints. This is called a crisis and it can result in damage to organs and joints which is cumulative over time.
Though the gene is traditionally more prevalent among ethnic minority groups, it is spreading among other groups. It causes a range of problems among patients, their families and carers. It can interrupt schooling, college or work and those suffering from it may have financial problems. They may not be able to sustain full time work. The benefits system often does not help those suffering from lifelong intermittent disability. Housing conditions may not be adequate to provide the warmth, freedom from damp conditions and hygiene facilities needed to cope with the Disorder. People may also suffer from social isolation, including families and carers. OSCAR Nottingham which was founded in 1983 helps to fill the gaps that publicly funded agencies often do not meet. Chrissie Wells, a Trustee for OSCAR says, “We raise all our funding ourselves and our many volunteers are very important to enable us to carry on helping those in need. We also spend our time raising awareness about this terrible blood Disorder, as many people are not aware of it. We remind people of the need to be tested to see whether they carry Sickle Cell Disorder, as if they have a child with another carrier that child has a one in four chance of inheriting full blown Sickle Cell.” OSCAR welcomes any financial or practical support to help meet the needs of those with Sickle Cell Disorder. Jayne Karue who is a Trustee of OSCAR said that “volunteering for OSCAR Nottingham is very fulfilling.” “We would encourage more people to volunteer their time and also offer financial support to increase OSCAR’s support and presence in the community,” says Mary Peter, also an OSCAR Trustee.BLOG COMMENTS POWERED BY DISQUS