Health, fitness and Food

This Valentine’s – Did you find your ‘Type’?

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By Iyamide Thomas, Regional Care Advisor, Sickle Cell Society UK iyamide.thomas@sicklecellsociety.org

We’ve just celebrated Valentine’s Day (reportedly the most celebrated day around the world besides New Year) when many current or would-be lovers  express  their love by presenting each other with flowers, chocolates, romantic gestures and cards known as ‘valentines’.  Did you know that Valentine’s Day is named after a saint called Valentinus who it is said was imprisoned for performing weddings on soldiers forbidden to marry and for ministering to Christians who were persecuted under the Roman Empire?   Legend has it that he healed the daughter of his jailer and before his execution he wrote “from your Valentine” as a farewell to her! By the 15th Century, 14 February had become associated with romance and the tradition of courtly love and this has now evolved to the elaborate and celebrated day that it is today.

Why Care about Type?

From the type of people we might have been attracted to this Valentine’s Day to the way we look and behave there’s a lot we inherit from our parents through genes, including our haemoglobin genotype.  This tells us the two genes (one inherited from each parent) that determine our type of haemoglobin.  Haemoglobin is the substance in our blood that gives blood its red colour and carries oxygen around our body.  The type of haemoglobin genes we inherit or pass on can play an important role in determining whether we or our children are affected by two serious inherited blood conditions – sickle cell disease and thalassaemia.  The usual type of haemoglobin gene is haemoglobin A.  Unusual haemoglobin genes include haemoglobin S (known as ‘sickle haemoglobin’), haemoglobin C and beta thalassaemia.  People can only get sickle cell or thalassaemia if they inherit two unusual genes for haemoglobin.  People who inherit only one unusual gene are known as ‘carriers’ or are said to have the ‘trait’. This Valentine’s many of you would have formed new relationships and cemented old ones.  It seems a good time to raise awareness of these two inherited blood conditions and for individuals to consider finding out about their haemoglobin type since each time two people who are carriers have a baby there is a 25% chance the baby will be born with sickle cell disease or thalassaemia.  A simple blood test will determine if you carry a gene for sickle cell or thalassaemia.

As Africans many of us would have heard of sickle cell disease since it affects us more than any other ethnic group in the world. Out of the 15million people estimated to have sickle cell worldwide, around 10 million live in Africa.   In the United Kingdom approximately 14,000 people are living with the condition.  Being a carrier of the sickle cell gene was found to offer some protection against malaria hence the explanation of why the gene and sickle cell disease is more common in people originating from the geographic parts of the world that have malaria (i.e. Africa, the Caribbean, Asia, the Middle East and the Mediterranean).  This historic link between the sickle cell gene and malaria was actually first made in Uganda!  In the early 1950’s three expatriate scientists pursuing their interests in sickle cell surveyed many of the tribal groups in Uganda noting marked variations in the frequency of the sickle cell trait as well as the highest rate ever recorded of 39%-45% among the Baamba people of Western Uganda.  One of the scientists later studied the relationship between the sickle cell trait and malaria finding some of the first evidence that the trait was moderately resistant to the malaria parasite. Sickle cell however should not be seen as a ‘Black’ disease as it affects ‘White’ people too, though much less frequently. 

Sickle cell disease is a serious inherited blood condition that can cause severe pain, anaemia and organ damage.  Someone has sickle cell disease if they inherit genes for haemoglobin that cause their round blood cells to change to a banana or ‘sickle’ shape when the cells give up their oxygen as they flow around the body. These sickle cells cause blockages in blood flow through the veins, resulting in severe pain known as a ‘crisis’ as oxygen is stopped from reaching the various parts of the body.  The sickle cells also break down quicker than normal blood cells, causing anaemia hence one type of sickle cell disease is known as sickle cell anaemia.

 Thalassaemia is a condition most common among people originating from India, Pakistan, Bangladesh, Cyprus and China.  However, people from Africa and the Caribbean can be carriers of the beta thalassaemia gene and if someone has both this and the sickle cell gene they have a type of sickle cell disease known as ‘sickle beta thalassaemia’.  Individuals who have inherited two beta thalassaemia genes have a serious condition known as Beta Thalassaemia major which affects their ability to produce enough red blood cells. This causes severe anaemia and organ damage and they need to be on regular blood transfusions throughout life.

Uganda and sickle cell

In Uganda there is a high prevalence of sickle cell disease and many families either have someone with the condition or someone who carries the trait, yet the level of acknowledged awareness is still low and there is still a lot of stigma and myths associated with the condition.  One of my Ugandan clients who lost her daughter Holly with sickle cell disease here in the UK started a sickle cell charity ‘Holly Foundation’ in her memory in 2011.  On 25 January 2013 Holly Foundation (Uganda) officially opened a sickle cell clinic in collaboration with Kasana Health Centre in Luwero district in Uganda.  The opening was attended by several ministers, organisations and other well-wishers.  In 2 months 200 patients had already visited the clinic which operates for only one day a week.  Demand is high and the clinic’s resources are limited with all services being operated from just one room.  There is only one examination bed and up to 4 children use this together at times!  My client purchases medications mostly from her own pocket but for those lucky to receive treatment she takes contentment in seeing their appreciative smiles.  Poverty, stigma and perhaps distrust in conventional medicine means some sickle cell patients use their own forms of medication or ‘treatments’.  It is important for people to be cautious of these forms of self medicating which can often cause more harm than good! 

Be the perfect partner!

In the UK there is an NHS Sickle Cell and Thalassaemia Screening Programme which offers all pregnant women the blood test to determine if they carry a gene for sickle cell or thalassaemia.  If the woman is a carrier then the father-to-be is also invited for the blood test.  (Guess what? Only 50% of these men currently accept their invite!). However, anyone can ask their GP for this blood test at anytime in their life especially before you and your partner decide to start a family. You can both then discuss any risks and the choices that are right for you. The Screening Programme also tests all newborn babies for the sickle cell gene. Latest data from screening newborn babies in the UK reports that 1 in every 70 babies born is carrying a sickle cell gene (Black African 1 in 7; Black Caribbean 1 in 8; White 1 in 450).  In the UK approximately 360 new babies are born with sickle cell each year and around 380,000 people in England are estimated to be carriers of an unusual haemoglobin gene.  Now the soppy cards, chocolates and flowers are over I am for one minute suggesting you immediately present your valentine with an invite to go for a blood test!  I am simply proposing that it is good to get educated about these important genetic conditions so you can make informed choices (about testing) if and when the need arises.  By so doing, you just might be seen as that perfect partner after all!

Useful Websites

www.sct.screening.nhs.uk

www.sicklecellsociety.org

www.ukts.org

www.familylegacy.org.uk

Make a difference to others and donate to the Sickle Cell Society by sending a text to 70070. In the body of the text type our code SICD13, leave a space and then type the amount you want to donate (e.g. SICD13 £5.)  

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