Friday, 18 June 2010

Life in a Sickle Cell

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. I’m proud that one of those states was Kaduna. I am even prouder that the event that took place in Kaduna State was at Kafanchan’s very own College of Nursing. And my pride over-floweth when I say that that event was organised by Fantsuam Foundation.

The arena event at the Centenary Sickle Day Celebration in Kaduna State

I cannot claim any part in the success of 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.

John Dada (left) with FF Director of Operations Kazanka Comfort (right) and GAIYA Programme Manager Akin Arowolo who mobilised the 60 volunteers

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.

Fantsuam clinic staff Mama Madaki and Mama Isa register children for testing on the back of an okada (left) whilst registered participants gather in the College's library for their counselling and testing (right)

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.

Clinic staff and Sickle Cell specialist Mrs Owodi takes one group through the basic geneology of Sickle Cell in the library's patio whilst visiting Sickle Cell counsellor Paulina Shehin explains to another group indoors.

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.

(left) Michigan State University was represented at the event but the doctor from the US was too busy testing and counselling: the audience inside the library was his priority whilst he was ably represented by his colleague outside. (right) Fantsuam was delighted to welcome First Lady of the State of Kaduna, Mrs Patrick Yakowa. In his sincere vote of thanks John Dada confessed that, though he had invited the Governor, his target had been his wife.

(below) Theatre students from the Kaduna State College of Education in Gidan Waya act out a drama about a couple wanting to get married. They celebrate when they learn they are compatible.

But for me, 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.

The First Lady and Mrs Usman witness a test on an under-five.

But what really gets me is the lack of awareness about Sickle Cell in this part – and probably many parts – of Nigeria, if not West Africa. I’m pretty sure that all West Africans in the UK are encouraged if not, forced, to take sickle cell tests before marrying. At some stage, most people in the UK would have come across some sort of Sickle Cell awareness raising – perhaps a TV programme, article in a magazine or street collection.

My Fantsuam colleague made a good point: today it’s all about HIV/AIDS. The funding, the promotion, the awareness. HIV affects everyone. As Mrs Usman said: “Sickle Cell is black people’s disease.”

But it’s a widespread and serious condition that affects millions. It's not only preventable 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.

Children affect by sickle cell tend to have similar features including a distended belly often caused by severe damage to the spleen.

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. I sincerely believe it’s the reason for Fantsuam’s success (and I almost put ‘phenomenal’ on there, but that would be arrogant). 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.

John Dada delivers his vote of thanks to the speakers and invites them to finish the afternoon attending the College's library where the 'real' work was being done.

Now we need 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.

The gathered press corps - a rare site in Kafanchan!

Members of the Kafanchan Sickle Cell Support Group. Mrs Leah Kyaris (right) is the Secretary of the Group. Mrs Kyaris is also a sickler.


Anonymous said...

The African concept of having children being a do or die affair in marraige needs to be discouraged. If two people in love dont see having children as being a factor for their continuing in the relationship,I would like to believe more people will not mind the outcome of whatever testing the need to undergo before they get married.

Based on the fact that people in Africa date for a much longer period before they get married,it's hard to one day call it quit.

I guess wat is right is right.right?
Cee nice one. I like the bit about election coming up,you know what the deal iz in Nija. They can even sponsor events.

Akim said...
This comment has been removed by a blog administrator.
Akim said...

Dear Cicely,
I saw your blog thru my Sickle Cell Alert on Google and I am impressed with your work. It is quite unfortunate that awareness about SS is low in the country despite its prevalence.
I live in Lagos and I have a ten year old daughter who is a Sickler. We have gone though so much but we got some palliatve with the use of the Carao fruit. Many people do not know about the the tree and it grows in Nigeria.
Let meknow if you wish to know more about the tree.
Keep keeping uo the good work our country needs it. May God reward you a thousand folds


Kennedy Ambrose said...

Hi Cicely,
This was impressive and quite an eye opener for many people that would go through this piece; one thing i know about the sickle cell campaigns is that, the churches have tried in the area of encouraging intending couples to get tested and sometimes go a step further in discouraging couples where its established that incompatible based on their genotypes, that approach had faced serious criticism amongst intending couples and sometimes they go ahead to fake test results just to get the nod to be joined by the church. This giant dtep by FF is a healthy development as they encourage people to get tested, I also have the opinion that the more people get educated about it the more the intervention is sustained. Welldone to John Dada and the entire FF team, That is quite a giant leap!

William Alden said...

Dear Cicely

Wow - your blog puts mine to shame!! It is wonderful - as is the work you are doing in Nigeria. All of us at Stationers' Hall miss you but I can see that you are needed more there than here. That said, I can't wait to see you back here sometime soon - hopefully in November. Please look after yourself.

With my very best wishes as ever


Leelavathy said...

Hi Cicely,

This is Leelavathy from India. I am really impressed by your work and your contribution towards society. It inspired me a lot to do some help to society.

Keep going and take care.