Sickle cell: do you know your genetic history?
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Hellen Adom with Trevor Phillips |
One of the most commonly inherited diseases in England, around 240,000 people carry the sickle cell gene and 12,500 people actually live with the disease. Sickle cell and the related disease thalassaemia are inherited so can affect anyone. However they are particularly common among black and minority ethnic groups.
Historically, it is fascinating to realise that this higher prevalence is because those who lived in malarial areas – particularly Africa and the Caribbean – have been at an advantage if they carry the gene for sickle cell (if you are a ‘carrier’ you don’t have the disease but you could pass it on to your children). Carriers have some protection against malaria in childhood so those who carried the gene were likely to live longer.
Of course protection against malaria is less of an advantage if you live in England where luckily mosquitoes are still pretty thin on the ground!
Do you know your status?
Many people don’t realise just how easy it is to find out whether they carry the gene for sickle cell or thalassaemia. It’s a simple blood test which you can have at any time, either before you have a family or when you and your partner are in the early stages of pregnancy. Once you know whether one or both partners carry the gene, it is possible for doctors to work out whether your children could be affected by the diseases.
We at the NHS Sickle Cell and Thalassaemia Screening Programme are working hard to make sure the test is offered at crucial times during visits to the GP or midwife but remember – you can ask to be tested at any time.
Dr Sandra Anglin is Programme Implementation Manager at the NHS Sickle Cell and Thalassaemia Screening Programme.
For more information on the diseases please contact the NHS Sickle Cell and Thalassaemia Screening Programme on 020 7848 6634 or visit www.sickleandthal.org.uk
Sickle Cell Society: www.sicklecellsociety.org
UK Thalassaemia Society: www.ukts.org
Covent Garden: Sickle Cell Event
Tue 9 Oct
‘Best of British’ – Sickle Cell Society
High profile DJ’s and acts are aiming to raise money and the profile of the Sickle Cell disease. Artists and DJ’s performing include Aaron Ross, Bugz in the Attic, Footloose, Alex Mills, Bobby Kray, DaVinChe, Ny, Steelo, Travis Blaque and Ty. All the proceeds will go to the Sickle Cell Society (reg. charity number 104 6631).
Guanabara, 5pm-2.30am, £5, tel: 07830 106 595, [email protected],
www.myspace.com/cellardoorandfriends, Tickets available via ticketweb on 08700 600 100 or go to www.ticketweb.co.uk
Living with sickle cell: Hellen Adom
Hellen is in her 40s and lives in Blackheath, East London and has sickle cell disease.
“I was diagnosed with sickle cell quite late in life. I was 17 and experienced my first ‘crisis’ – the acute pain which is caused by obstructed blood flow.
“I’ve never let sickle cell take over my life though. I am a full time mum and have three children – two of whom have sickle cell. I have undertaken much personal research into sickle cell and am vice chair of my local support group. I wrote a project for my masters in 2004 on the effects of the disease on family life.
“People need to know their genes before they start to think about having children. It’s like any long term disease where you need to know how to deal with it early on. There’s quite a lot of stigma around the whole subject ‘though, and people are a bit sensitive about screening. We have to overcome this as a community, so that people are aware of how these diseases could affect them.“
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