The Sickle Cell Society

The Sickle Cell Society was founded in 1979 by a group of healthcare professionals and people affected by sickle cell disorder. It is the principal health charity in Britain working for people with sickle cell disorder.

Sickle cell disorder collectively describes a group of chronic, debilitating, hereditary blood conditions in which a mutated form of haemoglobin distorts the red blood cells into a crescent or sickle shape at low oxygen levels. The resulting ‘sickle cells’ obstruct blood flow, which can lead to severe body pain (called a crisis) , anaemia and damage to body tissues and organs over time.

Sickle cell disorder affects mainly people of African, Asian, Middle Eastern and Mediterranean ancestry.

Up to 15,000 people in the UK are believed to have sickle cell disorder and 300 babies are born annually with the condition. 240,000 people are thought to be carriers of the sickle gene.

The Sickle Cell Society's Education Fund provides financial support for individuals who miss out on school / college and need extra tuition, or help to individuals who require IT support.

The Children's Expert Patient Programme runs workshops for young people with a long term medical condition to help them increase their confidence, better manage their condition and improve their quality of life.

Update June 2008

'Feel My Pain' –Young musician launches CD / DVD to raise awareness of sickle cell disorder.

When 29 year old Adebisi Aluko (also known as the artist A.D.E- Africans Did Entertain) asked his employer if he could go home because he was having a sickle cell crisis, the response was that if he did so he should not bother coming back. Like so many, the employer was unaware of the effects of sickle cell disorder or the painful crises Ade was experiencing. Despite his pain Ade stayed at his desk, put pen to paper and wrote the following: "only God can feel my pain, wondering why I'm so afraid, that this pain may take me away to a place I rather not say". Thus began the lyrics to 'Feel my Pain', a song Ade hopes will help raise public and professional awareness about sickle cell disorder. The Sickle Cell Society are pleased to have supported Ade in the production of the 'Feel my Pain' CD / DVD and to have hosted its recent launch.

'Feel my Pain' can best be described as a 'Rhythm and Blues' song in which a young man poignantly describes life living with an often painful, long term medical condition . Its unique DVD features other young people, all of who have sickle cell disorder.

Dr Kathy Hawley, Consultant Advisor to the Children's Expert Patient Programme had this to say:

"Young people who live with a chronic condition like sickle cell have all the issues to cope with that teenagers experience as well as the issues of their condition. Ade has been a young facilitator in a programme which helps young people with these conditions to stay positive about life. This song is one of the many things that Ade has achieved and it will help give that much needed encouragement to others."

Dr Lorna Bennett, Chairperson of the Sickle Cell Society said:

"Sadly, Ade's experience with his unsympathetic employer is not unique and many individuals fall victim to this lack of awareness of the condition in other areas such as housing, education, social services and healthcare. The Sickle Cell Society will continue to raise public and professional awareness of sickle cell disorder. The painful crises and treatment for people with sickle cell disorder is of particular concern to the Society and we will soon be launching standards for the clinical care of adults with sickle cell disease in the UK, which we hope will ensure an acceptable level of awareness and management of the condition in the community and hospitals around the country".

'Feel my Pain' CD / DVD should help raise awareness of sickle cell disorder particularly among young people, as music is an ideal way of capturing their attention. Special features include information on sickle cell, interviews with young people and statements from health professionals. The DVD which was funded by a charity grant is offered as a complimentary accompaniment to the CD.

The CD will be sold for £5 and 40% of sales from each CD will go to the Sickle Cell Society's Education Fund. The DVD / CD package will be available for purchase in the coming weeks.