19th June is World Sickle Cell Day, an annual day recognized by the United Nations to raise awareness of sickle cell disease at a national and international level. The United Nations called it “one of the world’s foremost genetic diseases” but how much do we all really know about the condition? Sickle cell disease is a collective name given to a group of similar conditions which affect our red blood cells. The most common one is ‘sickle cell anaemia’. It is a genetic condition, which means it is passed on from your parents and you are born with it. Sickle cell causes normally round and flexible blood cells to become stiff and sickle shaped (like a half-moon), stopping the blood cells and the oxygen they carry from freely moving around the body. This can cause severe pain known as a ‘crisis’, anaemia and damage to major organs such as the spleen, liver, lungs and kidneys. Sadly, people can also die from sickle cell.
Sickle cell disease can affect anyone, but predominantly affects people of African and Caribbean heritage. This is because the sickle cell gene evolved to protect against malaria and carrying one copy of the gene (which is known as being a ‘carrier’ or ‘trait’) offered some protection from malaria. A person needs two copies of the gene (one inherited from each parent) to have sickle cell disease. In the UK, approximately 15,000 people have sickle cell disease and around 270 babies are born with it each year. There is also a National Health Service (NHS) Sickle Cell and Thalassaemia Screening Programme that tests pregnant women, partners and new-born babies. You can also ask your GP for the screening blood test before you’re expecting a baby to see if you and your partner carry the gene for sickle cell. You should do this particularly if you have family members who are trait or if you’re planning children. This is known as ‘preconception’ testing.
‘Celebrating Progress’
This year the Sickle Cell Society theme for World Sickle Cell Day is ‘Celebrating Progress’. However, our ‘wear something red’ theme is continuous, so feel free to raise awareness and wear red on the day! We are celebrating the progress which has been made in terms of medical advances for people living with sickle cell, improved standards of care being developed as a result of our ‘No One’s Listening’ report, raised awareness about blood donation and in particular we are talking about ‘priapism’ which affects males with sickle cell. Additionally, we are celebrating the launch of a new screening report: ‘It’s in Our Genes: Service User Experiences and Feedback on the Communication of Screening Results for Sickle Cell and Thalassaemia’.
Sickle Cell Society –Related websites
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