Sickle Cell Worldwide

[slideshow] Why thousands of children were born with this condition?

Some individuals or parents of children who were born with this disorder have the Sickle cell trait and they are therefore known as carriers of the gene S or sickle, which is the abnormal haemoglobin or red cells, which can be passed to their children if both partner are carriers. They do not develop any symptoms of the condition such as their children with sickle cell; so it is important for anyone to have a blood test to see if you have sickle cell trait to avoid having a child with the condition. Some people sometimes think that the size of an individual determines whether he/she has a sickle cell gene or trait, this is false; anyone especially black African and Afro-Caribbeans can be a carrier of the sickle cell trait. Only the blood test will determine whether he/she has it or not. Most people who have sickle cell trait are healthy. If you and your partner both have the sickle cell trait, there is a 25% chance that any child conceived may have sickle cell anaemia or disorder and 50% chance they will have the trait.

What about the worldwide aspects of this illness?

• Dr Williams from Oxford university, 80% of cases are in Africa with 200,000 new born every year. Dr Jemima Dennis-Antwi, Regional Advisor (Anglophone Africa), International Confederation of Midwives, if nothing is done by 2020, the number of new born with this condition in Africa will be increasing by 400,000 every year.
• This condition affects many countries across the world (1 in 4 West-Africa and 1 in 10 Afro-Caribbeans, and is also found in people who originate from the Mediterranean, Asia and the Middle East. It is less common in Caucasians).
• Due to the lack of specialised centres in developing countries hundreds of children affected by this condition are dying every day in Africa and thousands every year.

What has been done by the authorities in the UK to fight against Sickle Cell Anaemia or Disorder?

The fight against this condition in the UK as in any Western countries has been improved for decades now, through National Screenings in the most hospitals units for blood tests and followed by a huge advocacy from scientists and sufferers. In October 2008, the All-Party parliamentary Group for Sickle Cell and Thalassaemia (APPG) had been set up to raise awareness of the conditions in Parliament. This institution is mainly comprised of MPs from all political parties. The Shadow Minister for Public Health, Ms. Diana Abbott, MP, is the Chair. As to strengthen campaigns and to encourage campaigners and researchers of the field, every year, this institution offers an All-Party Parliamentary Group Reception in the House of Common in which scientists on the field and sufferers leaders of patient groups are invited to discuss issues in which the condition is involved and the NHS changes.

Is there any stigma linked to Sickle Cell?

In the UK, as in many other countries across the world, children with this condition face a huge stigma. Many of them have sometimes to explain repeatedly their symptoms at schools, hospitals and even to their extended families. This lack of basic knowledge on the condition had set up one kind of general stigmatisation that parents were then so shameful to explain the condition of their children to their communities. Affected children were then growing up with that stigma and as a result of this, even in the UK today, less than one thousands of sickle cell sufferers are directly involved to sickle cell campaigns despite the fact that, there are more than 14,000 of patients in the UK.

Does Sickle cell disease have a specific life expectancy?

Thanks to recent scientific advances, a sickle cell sufferer does not have a fixed life expectancy. However, it depends upon the environment in which the patient lives. According to the observations made in the Western countries by voluntary groups on this condition and associations, it is clear told that a sickle cell sufferer, receiving adequate medical care, can live as long as a healthy individual. The presence of specialist centres and expertise in this area enables sufferers to develop normally whether this is medically, educationally or socially. In most western countries, patients are given psychological care by non- governmental organisations together with scientists working in that area. Developing countries have limited funds, which prevent them from copying the example of western countries. For example, it is impossible to say for certain that a sickle cell sufferer in Africa has the same life expectancy as a sufferer in the west. In developing countries the lack of adequate infrastructures produces a higher mortality rate. Malaria is one of the major causes of death for sickle cell sufferers.

The lack of specialists means that complications linked to sickle cell anaemia such as necrosis, osteites and persistent ulcers allowed to develop, which can lead the sufferer to become disabled. The fact that there is an insufficient number of specialist centres and equipments for this type of operations makes it more common. The lack of political involvement from the continent’s leaders only leaves voluntary groups and doctors facing those harsh realities. Patients and their families do not have psychological support and often lack deep meaning information about the illness. Some sufferers and their family blame satanism for this ; they follow some sort of fetishism and rites in order to find a utopia recovery.