SICKLE CELL DISORDER: EARLY DETECTION THE BEST SOLUTION.

 

 



Dr. Adeyemo Titi (Consultant Haematologist, Lagos University Teaching Hospital).

One of the disciples of Jesus Christ named Judas, saw Mary lavishing an expensive perfume on Jesus, and he said to Jesus, that the perfume should have been sold and the money given to the poor. Jesus’ response was that, we will always have the poor amongst us.

The same thing goes with people with Sickle Cell Disorder. We will always have them amongst us, but the quality of the lives they live or how long they live depends on how early their genotypes are detected.

At a workshop organised by Sickle Cell Foundation Nigeria in commemoration of The 2015 WORLD SICKLE CELL DAY held on June 11, 2015 at the National Sickle Cell Centre in Lagos Nigeria, Dr. Adeyemo Titi a Senior Lecturer/Consultant haematologist, Lagos University Teaching Hospital made it known that the best way to make people who have the Sickle Cell Disorder live a normal life is for their parents to get their children tested as babies.

According to her, when their genes are known very early in life, their parents will start managing them from that tender age by giving them the prescribed drugs and vaccines recommended for them by medical experts.

As soon as this is done, Dr. Adeyemo disclosed that people with SCD will not experience the crisis that people with SCD who did not particularly get to know about their status early, usually encounter.

When asked by one of the participants in the workshop, that when should women who live with SCD marry? Since it is believed that death can come at anytime, the response of Dr. Adeyemo still remained that if detected early and managed well, people living with the disorder can live as long as those without the disorder.

But, one thing is key, early detection and proper maintainance.

Mrs. Ayo Otaigbe, director Sickle Cell Foundation Nigeria, testified to what Dr. Adeyemo talked about early detection and maintainance for people living with Sickle Cell Disorder. She cited several examples of people whose parents got their children tested as babies and whose parents managed the disorder well. According to Mrs. Otigbe, those children are now doing well in their chosen careers. Some of them are even married. She also sounded a warning to parents, that teachers of their children should be aware of the disorder.

By doing so, Mrs.Otaigbe noted that some certain measures would be taken by the teachers to protect the children.She said that when school teachers are aware of the disoder, if it rains and other children are playing in the rain, the school or class teacher who has been briefed about a child with the disorder will obviously not allow the child to play in the rain because cold negatively affects them. As a genetic counsellor, she said she always advises parents during raining season to buy for their children with SCD, a rain coat, rain boot and umbrella because people with SCD are usually allegic to cold.

Mary Alale-Yusuf a health correspondent with Channels Television also gave two testimonies of those she knows living positively with SCD. One is a fifty-five year old woman and another is her nephew who will be graduating from the university very soon.

The fear that people with SCD will die young (21) should be erased from our minds. If people with the disorder are properly managed, they live as long as people without the disorder, she(Dr. Adeyemo) emphasied. She also gave an example of an eight-five year old woman living with Sickle Cell Disorder which really proves that there’s quality life for those living with Sickle Cell Disorder.

Dr. Annette Akinsete, National Director/Chief Executve Officer Sickle Cell Foundation Nigeria, also broke the goodnews that Lagos University Teaching Hospital at Idi-araba Lagos Nigeria is working on Ward E7 which will be used for Bone Marrow Transplant. According to her, the project will be completed at the end of 2015. The Foundation has in the past worked with an Italian Organisation and they have successfully sent forty-five Nigerians abroad for Bone Marrow Transplant. The forty-five people according to her are now living normal lives.

With LUTH completing the ward E7 by the end of 2015, more people will have the opportunity for the Bone Marrow Transplant which serves as a cure for people living with the disorder.Though that does not mean their genes will change.

 

 

Mrs. Ayo Otaigbe (Expert Genetic Counsellor Sickle Cell Foundation Nigeria).

SICKLE CELL FOUNDATION NIGERIA NEEDS ABOUT 250 MILLION NAIRA:



Picture above shows Yemi Onijara right, addressing the audience on the function of the Genetic Analyizer Software at the Sickle Cell Foundation Nigeria Clinic at Idi-Araba Lagos Nigeria.   

As part activies lined up to mark the 2014 World SICKLE CELL DAY billed for June 19 2014, the management of SICKLE FOUNDATION NIGERIA organised a media tour led by the chairman of the Foundation, Professor Olu Akinyanju. The purpose of the tour was for the media to witness the State of-the-art equipments that was in place and how to get more to meet up with international standard. The Foundation according to the Chairman needs about 250 Million Naira to make the clinic compete favourably with any Sickle cell Clinic in the world. The Genetic Analyizer department for instance has a Genetic  Analyizer equipment which is used for a million of tests; Like paternity dispute, Bone marrow transplant,Forensic etc. The results gotten from this machine is sent overseas for verification because the Genetic Analyizer Software is not in place, thus making treatment for people living with Sickle Cell Disorder expensive and unaffordable for the common man. For instance, a prenatal diagnosis used to determine the genotype of an unborn child cost about 230 thousand naira and usually takes about one week for the result to be ready. But if the Genetic Anayizer Software is in place, the cost will drop to about 100,000 Naira and the result will be ready in forty-eight hours says Yemi Onijala Molecular Labouratory Scientist who works with Sickle Cell Foundation Nigeria Clinic.



SICKLE CELL FOUNDATION NIGERIA SOLICITS FOR SUPPORT

L-R Dr. Annette Akinsete National Director/CEO Sickle Cell Foundation Nigeria, Chairman Sickle Cell Foundation Nigeria, Prof. Olu Akinyanju and Mrs. Ayo Otaigbe member of the board directors of Sickle Cell foundation Nigeria addressing Newsmen at the National Sickle Cell Centre at Idi-araba in Lagos Nigeria on June 13, 2013.

Sickle Cell Foundation of Nigeria solicits better life for Sickle Cell patients. Professor Olu Akinyanju Chairman of Sickle Cell Foundation Nigeria made it known to newsmen on June 13, 2013 at the National Sickle Cell Centre situated at Idi-araba in Lagos Nigeria that the foundation needs the support of governments at all levels, be it federal, state or local to be able to make life better for people with Sicle Cell Disorder in Nigeria. According to Prof. Akinyanju, over forty million Nigerians live with Sickle Cell Disorder, thus making Nigeria the country with the highest Sickle Cell patients in the world. The foundation alone cannot solely make life meaningful for Patients with Sickle Cell Disorder says the chairman of the foundation. As the world marks the 2013 WORLD SICKLE DAY on June 19, the foundation is using the opportunity to call on the government of Nigeria, private sector, NGOs, and Communites across the country (Nigeria) to support the Sickle Cell Disorder patients by implementing the policies the Nigerian Sickle Cell Expert Advisory Committee (NISEAC) has recommeded since April 2008. The recommendation is meant to improve the quality of life of people with Sickle Cell anaemia in Nigeria and increase their average life- expectancy from less than 20 years to what obtains among affected persons in the US- 57 years – and even surpass it.

It is imperative therefore that the very useful recommendations made by the Nigerian Sickle Cell Expert Advisory Committe (NISEAC) since April 1998, be implemented in order to uniformly improve the standard of care and significantly reduce avoidable illness and deaths among affected persons.  These recommendations are as follows

1. Introduction of Newborn or Infant Screening programme for SCD to foster early diagnosis.

2, Provision of free prophylactic measures for infections that they are prone to and which frequetly cause severe illness and deaths in children with Sickle Cell anaemia- oral penicilin and pnuemococcal vaccines.

3. Training of Sickle Cell Specialist Nurses to increase access to well informed skilled health workers.

4. Development of standard Blood Transfusion Services throughout the country.

5. Prevention of the fraudulent marketing of remedies of unproven benefit to the Sickle Cell affected population. With the implementation of this recommendations, Prof. Olu Akinyanju is sure that life will be better with people living with Sickle Cell Disorder which incidentally happens to be this year`s theme: BETTER LIFE WITH SICKLE CELL.

 

. A Sickle Cell patient undergoing a Transcranial Screening at the National Sickle Cell centre on June 13, 2013.

NIGERIAN DOCTORS SET TO BATTLE SICKLE CELL DISORDER

The 14^th Genetic Counselling Training course on sickle Cell Disorder organised by Sickle Cell Foundation Nigeria ended today March 30, 2012 at the National Sickle Cell Centre, Ishaga Road, Idi-Araba Lagos Nigeria with about thirty participants graduating from the two week course. The most exciting thing about this training is that for the first time since the course was initiated, the Doctors outnumbered the nurses. In times past, the nurses had always outnumbered the Doctors, but this edition was different as the Doctors outnumbered the nurses. The number of Doctors that participated in the course was eleven while the nurses recorded nine. According to the Chairman of Sickle Cell Foundation Nigeria, Professor Olu Akinyanju, the course was initiated so that genetic counsellors can ensure that their clients-affected persons, their parents or healthy carriers of the sickle gene- are provided with all the information necessary to assist them in understanding the pattern, the manifestations and the complications of SCD. This enables them cope better with the disorder and make informed life-style decisions. Trained councellors also help to establish and run support and advocacy associations such as Sickle Cell Clubs, create awareness and promote the development of dedicated Sickle Cell Clinics and other appropriate facilities in their communities. Speaking to Dr. Sani Awwalu an Haematologist with Ahmadu Bello University Teaching Hospital in Zaria, Kaduna who was one of the eleven Doctors that attended the course and also came second in the training programme, he said that the purpose of his attending the training was because Nigeria has the highest number of Sickle Cell patients in the world which is actually disturbing with government doing little or nothing to tackle this problem. This actually made me come for the course which is of international standard so that I in my little way can affect the society positively. Photo Above: R-L Professor Olu Akinyanju, Chairman Sickle Cell Foundation Nigeria addressing the audience at the Closing/Certificate Award Ceremony of the Genetic Counselling Training Course on Sickle Cell Disorder, Dennis Okoro, Director MTN Foundation, representing Ambassador Hamzat Ahmadu, Chairman MTN Foundation, Dr. Victor Adekunle, representing the Chairman of the occasion, Professor Wale Oke, Chief Medical Director LASUTH and Francis Barde head of corporate affairs Union Bank of Nigeria, representing the Group Managing Director of Union Bank, Mrs Funke Osibodu at the occasion

The participants

Mrs Florence Oreitan Adefolayin receiveing her first position prize from the Chairman of Sickle Cell Foundation Nigeria, Professor Olu Akinyanju at the Closing/Certificate Award Ceremony of the Genetic Councelling Training Course on Sickle Cell Disorder which took place at the National Sickle Cell Centre, Ishaga Road, Idi-Araba, Surulere, Lagos Nigeria on March 30, 2012

Dr. Sani Awwalu a Haemotologist says he came for the training because he is disturbed by the high rate of Sickle Cell Disorder in Nigeria