Sickle Cell Society
The Sickle Cell Society was first set up as a registered charity in 1979. It was formed by a group of patients, parents and health professionals who were all concerned about the lack of understanding and the inadequacy of treatment for sufferers of sickle cell disorders.
Our vision is to be the most successful sickle cell organisation nationally with a wide network of well-informed, committed and active supporters working at local, national and international levels.
We will be better able to empower and assist people with sickle cell disorders to achieve their full economic and social potential.
The disorder affects the red blood cells which contain a special protein called haemoglobin (Hb for short). The function of haemoglobin is to carry oxygen from the lungs to all parts of the body.
People with Sickle Cell Anaemia have Sickle haemoglobin (HbS) which is different from the normal haemoglobin (HbA). When sickle haemoglobin gives up its oxygen to the tissues, it sticks together to form long rods inside the red blood cells making these cells rigid and sickle-shaped. Normal red blood cells can bend and flex easily.Blocked blood vessels
Because of their shape, sickled red blood cells can’t squeeze through small blood vessels as easily as the almost donut-shaped normal cells. This can lead to these small blood vessels getting blocked which then stops the oxygen from getting through to where it is needed. This in turn can lead to severe pain and damage to organs.
This article reports interviews with six men and four women who have sickle cell anaemia. They are aged 21-33 and have all had further or higher education. They enjoy many activities, including being with and helping other people, reading, music, dancing and clubbing, cinema and theatre, and sport. Asked about “what is most helpful in your life?” every one mentioned family and friends, and four mentioned their faith in God. None saw themselves as victims, though they accepted extra help when they were ill.
They were asked “Is there anything you would like to change or improve in your life?” Only two people said “sickle cell”, but others talked about changing employers’ and society’s attitudes towards disabled people. Some would like to stay healthy, have fewer crises, and have more energy, or be more positive – or richer. On changing society, six people wanted more positive public attitudes towards sickle cell, and two wanted doctors to know what it is like to live with sickle cell. Five people mentioned racism.
Their future plans include getting qualifications or a better job, travelling, having a baby, finishing a book, finding a partner, or getting their own home and greater independence. Only one mentioned gaining better health. On being or becoming a partner, three are happy in their relationships, the others would like to find the right person, but seemed happy being single. Nobody mentioned sickle cell as an obstacle to a relationship beyond needing someone who understood about the condition. Nearly everyone said that they would appreciate the support of a partner, but only if they could give as much in return. On being or becoming a parent, the three parents were very positive, and did not mention any problems from sickle cell. Some others were keen to have children, but two thought that having and possibly passing on sickle cell was a problem. On prenatal screening, only one person didn’t know about it.
Everyone else thought it was important, two said it should be compulsory, and others said it should be optional. Proper information is vital, and some would consider abortion, but most of them saw screening as a way for parents to prepare properly for the coming child.
Contact Sickle Cell Society
Sickle Cell Society
54 Station Road
London
NW10 4UA
020 8961 7795
020 8961 8346
info@sicklecellsociety.org
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