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Fantsuam Foundation's UN Sickle cell Day : A Witness' account

This is Cicely's (VSO volunteer at FF) edited account of the UN Sickle Cell Awareness event which Fantsuam Foundation was instrumental in organising.

"Sickle Cell Anaemia – these are words which most Britons will recognise. In fact I’m sure they would be recognised by most societies that have large population of West Africans. Except perhaps in Kafanchan, or indeed much of rural Nigeria.

It is estimated that 25-30% of Nigerians are carriers of Sickle Cell Anaemia which affects 150,000 of the country’s births every year of which perhaps only 2-5% will survive beyond the age of five. Yet Global Sickle Cell Centenary Day was celebrated in only two of thirty-six Nigerian states. Fantsuam Foundation was responsible for organising a spectacular event in Kaduna State at Kafanchan’s College of Nursing.

This event which was led by the zeal and passion of Fantsuam chief executive John Dada who earlier this year established the Kafanchan Sickle Cell Support Group. Helping with the event were 60 of Fantsuam’s trained GAIYA volunteers as well as numerous members of staff from the clinic and HIV department with assistance from the Kafanchan General Hospital and College of Nursing.

In a country not renowned for its time-keeping and organisational abilities, the event started sharp at 10.00am with all proceedings complete by 12.10pm, 10 minutes after the scheduled closing time. In that short period 1,300 visitors from all walks of life had learnt more about Sickle Cell, hundreds of children under 5 had been registered for testing (we’re waiting for the final numbers to come in) and they and their mothers had been given presentations on the condition by Fantsuam staff and volunteers.

Presentations which described what the condition was and how it was caused, how couples could get tested to determine if they were carriers and thus, know their chances of conceiving a sickler child, and how to manage the condition to prolong and ease the lives of children and adults living with the condition. In another room hundreds of children were being tested, the number limited only by the number of test kits available.

In the field in the centre of the College’s wide compound amongst invited guests and members of Fantsuam’s Sickle Cell Support Group, the wife of Kaduna State Governor Patrick Yakowa was giving her support to the event, international medics were holding forth, and College Students were enacting lively dramas.
But for Cicely, the highlight was a speech by Senate candidate and former Federal Minister of Finance, Mrs Nenadi Usman.
Mrs Usman’s third child, Bilkisu, is a sickler. She is eleven years old. Mrs Usman and her husband have always been very healthy and never spent a day in hospital. Even for highly educated Nigerians, it was not usual for couples to get tested before conceiving. It wasn’t until Bilkisu was five that the couple discovered the cause of their last daughter’s constant illnesses. Mrs Usman pleaded with couples in the audience to get tested before marriage, to avoid the pain of having to see your child suffer terribly, with no real chance of relief, because of a precaution that you didn’t take. She related how on one of numerous hospital visits, wracked by the pain caused by Sickle Cell crisis, her daughter had asked: “Mummy – why is this happening to me? Is it my fault?”. Mrs Nenadi Usman speaks from her heart about the impact of Sickle Cell on her family.The Usmans are lucky that just one child is affected. One member of the Kafanchan Sickle Cell Support Group had had six children. Four of which were sicklers. All of which were dead by the time they were 30.
Mrs Usman not only pleaded for couples to get tested. She also urged parents to get their newborns tested so that they could learn how to treat and manage the condition which need not be fatal.

But it’s a widespread and serious condition that affects millions. It's not only preventable (with genetic counselling) but also treatable.

Most sickler children die from preventable complications. As well as being sickle-shaped, sickle red blood cells are also hard causing them to block blood flow as well as many more extreme forms of ‘crisis’ which can involve increased susceptibility to infections, kidney failure, chronic and acute pain episodes, and stroke.

Yet despite these alarming facts, Sickle Cell Anaemia is low on the agendas of international funding agencies which ultimately set the agenda for all those organisations which rely on those agencies for funds.

Kafanchan is a lucky town. John Dada acts first and then hopes the money comes in. He sees a problem and deals with it. He doesn’t wait for the agencies to develop a support programme. All of the Foundation’s most successful and enduring programmes have come from responding to a local need rather than an external funders’ Request for Proposal. So far, the success of the programmes has proven its worth and the support has arrived.

Now Fantsuam Foundation needs to hope that the money comes in. To equip Kafanchan General Hospital’s new Sickle Cell treatment centre with doctors, test kits and drugs and to support wider awareness raising.

2011 is general election year in Nigeria which may have had something to do with the number of politicians at the event. Let’s hope some of them, and the press that attended the event, take the story back with them and support Sickle Cell awareness.
To have fewer children dying unnecessarily, to spare the parents the pain (and cost) of constant hospital treatment, and to help those with the condition live longer, more comfortable and fulfilled lives."


Here are more of the wonderful photos taken by Cicely on Teleri's camera.