3 July 2001
A leading medical research charity is calling for greater awareness of a potentially-fatal blood disorder, with active backing from a Member of Parliament.
Action Research is currently funding pioneering projects into sickle cell disease - a painful and distressing illness that mainly affects children of Afro-Caribbean descent.
Labour MP Jane Griffiths, who recently retained her seat for Reading East, is backing the charity’s work, and calls for increased awareness and research into what is sometimes criticised as a neglected health problem. Today (Tuesday July 3), she is tabling an Early Day Motion on the issue to coincide with national Sickle Cell Awareness Day (July 4).
The MP’s interest in the disorder follows the case of a constituent who had difficulties with an insurance policy after her daughter died from sickle cell anaemia -a form of sickle cell disease. Last year Mrs Giffiths suggested that racial prejudice could be holding back much-needed research into the disorder.
She says: ‘I want to draw the attention of The House to this problematic condition which is on the rise in the UK. Equal access to screening programmes and medical assistance is paramount, as is a commitment to quality medical research.’
Sickle cell disease is caused by changes in the haemoglobin- the substance that carries oxygen inside red blood cells. Where normal red blood cells are flexible and oval-shaped, sickle cells are stiff and shaped like a crescent moon, making them more likely to stick together and so clog blood vessels.
Sometimes this happens in the major blood vessels supplying the brain, resulting in poor blood circulation, and in some cases, stroke.
As part of its overall efforts to overcome disease and disability, Action Research has funded a total of six research projects into sickle cell disease over the past 12 years - a total financial commitment of £420,653.
One current project being led by researchers in Oxford and London is focusing on conditions in the circulation such as low oxygen levels and dehydration, which can cause the body go into a sickle cell crisis.
Working on the team, Dr Sarah Ball, a senior lecturer and honorary consultant in paediatric haematology at London’s St George’s Hospital Medical School, says: ‘There are still very few treatment options for sickle cell, and it remains a major health problem. Cases vary from very mild to a pattern of unpredictable, excruciatingly painful and potentially life-threatening crises which are distressing and frightening.
‘Even between crises affected individuals carry the knowledge that a crisis may occur at any time, disrupting the best laid plans for education, exams, social life and employment.
‘Some current treatments can help, but at the cost of significant side effects, and they are not available to all. There is still, therefore, an urgent need for active research into sickle cell anaemia, with the aim of identifying safe, effective and economically attainable treatments that prevent red cell sickling and the damage that ensues.’
In another Action Research study being funded in London, researchers are assessing a large group of children with sickle cell disease in order to understand more about how poor blood circulation in the brain may be related to future school difficulties, and when these might start.
Action Research’s Touching Lives Campaign aims to raise £2m for vital medical research. Visit the website at www.action.org.uk
For further media information please contact Nicole Duckworth in the Action Research press office on 01403 327403 Fax: 01403 210541, or email firstname.lastname@example.org
Notes: *Sickle cell disease affects particularly Afro-Caribbean people, as well as people from parts of Europe, Asia and the Middle East. The most severe form of the disease affects one in 300-400 of the world’s black population, and numbers are increasing in the UK.
*In the UK, about 3,500 babies born every year will carry the sickle gene, and each year, more than 200 of them will develop the disease.
*There are three common types of sickle cell disease: sickle cell anaemia or haemoglobin SS - this is the most common haemoglobin SC, where the genes for sickle cell and haemoglobin C are both inherited - this is generally milder than sickle cell anaemia sickle-beta thalassaemia, where the genes for sickle cell and beta thalassaemia are both inherited - there is both a severe and mild form of this disease
*Current treatment includes hydroxyurea (which tries to make the sickle cells more flexible), blood transfusion programmes and bone marrow transplantation. Children with sickle cell disorders are extremely susceptible to infection, including meningitis and septicaemia. Neurological complications include stroke, fits and coma.
*Sickle Cell Awareness Day is organised by the Sickle Cell Society (020 8961 7795)