The aim is to raise the awareness of this disease both locally and internationally.
To screen 6000 children in the Kafanchan area of Nigeria. (Nearly completed)
To provide psychological and medical support for the sufferers and their families.
The UK and Nigeria teams were able to exchange information via their usual typed skype meeting.
John Dada, although unable to attend personally this week, emailed us with the following exciting update about Fantsuam Foundation’s real contribution in combating Sickle Cell Disease. As part of the Cohort Pilot Study he gave us the following latest statistics: So far he has successfully managed to screen 2,215 children for Sickle Cell disease. In addition to those screened on the UN Sickle Cell Awareness Day in June and those screened in Gwantu, an additional 630 children have recently been screened in Manchok and the team plans to be in Attakar on Thursday 15th and in Kagoro today. John’s target is to screen 6,000 children. Photos of these various screenings are hopefully ‘in the pipeline’ to the UK.
Fantsuam was selected to participate in the first SC Cohort study in Nigeria.
A sustainable Pilot Scheme
This project aims to improve survival and quality of life for children with Sickle Cell Disease (SCD) by instituting early infant diagnosis and establishing standardised care that is sustainable through capacity building of service provision in a comprehensive manner from laboratory diagnosis, prevention, treatment and rehabilitation.
The project will be implemented in Nigeria, the country with the highest disease prevalence, with the help of UK-based doctors, largely Nigerian migrants. The issue is particularly relevant in the targeted country in that the majority of SCD patients in the UK arrive from Nigeria and West Africa and the high mortality in Nigeria is a deterrent for those patients and families returning to Nigeria.
John tells that:
"We had a radio panel discussion yesterday (18th) and the feedbacks we got were very encouraging.
The TV Panel discussion was recorded in open air. We had two genetic counsellors, two parents and a sickle cell patient on the panel to share experiences and raise awareness about tomorrow's event.
The First Lady and Mrs Usman witness a test on an under-five.
Originally uploaded by Dadamac Community
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.
SICKLE Cell Disease is an agonising blood condition which affects one in every four West Africans. While it is generally controlled in the western world, a lack of medication and funding in Africa means that victims will regularly die.
Wednesday's weekly online meeting between the UK and rural Nigeria came up against a familiar enemy - connectivity problems. Initially things looked bleak as we faced a long time delay with receiving and sending Skype messages. However, following a quick exchange of SMS messages the meeting was finally able to start, allowing John Dada to appear online for half an hour to bring us up to date with the latest news.
We were pleased to hear that the ESSPIN programme is now well underway and are looking forward to seeing the photos.
John also informed us that preparations for the Sickle Cell Awareness Day Celebrations had entered the final phase.
However we were especially excited to learn that over the last two months a series of training courses has been under way at Fantsuam Foundation. John said that virtually every family in their village had now attended one or more of these sessions. He has asked a member of his team to send me photos and a short summary of the training taking place.
Sickle Cell Awareness day was created by the United Nations to recognise Sickle Cell Disease as a global health crisis.
Member states were urged to raise awareness of this terrible genetic disease on June 19 each year.
At yesterday's weekly UK/Nigeria Dadamac team meeting, John explained that a SCD support meeting had been held at Fantsuam last Saturday . A documentary in collaboration with the Abuja SC Support group is being prepared for showing on this year's Global SC Day.
Those interested can view my previous blog entry about the daunting task faced by John and his team, who are battling overwhelming need with severely limited resources.
The Fantsuam Sickle Cell Support Group meeting is held on the third Saturday of every month. Support groups are usually comprised of people who have either been affected or are carers. Attendance is growing each month - with more than 80 people at last Saturday's meeting.
Due to the vast numbers there is a need to change the venue, so canopies under mango trees at the fishfarm will be used for future meetings. Attendees came from as far away as Akwanga (about 80km from Kafanchan) and John said he " just felt helpless in face of such need."
The meetings are for networking, with parents and carers sharing information about how they are coping. A nurse councellor answers questions and gives advice on how to cope with sickling crisies.