AT LAST!!! A CURE FOR PEOPLE WITH SICKLE CELL DISORDER:



                                                                  

                           Bone Marrow Transplant in process 

                                                     

QUESTION: Is there a CURE for SICKLE CELL ANAEMIA (Haemoglobin SS)?

ANSWER: YES, there is a cure for sickle cell in the form of Bone Marrow Transplantation (BMT). BMT for sickle cell has been around since the late 1980’s - although still not widely available.

WHAT YOU SHOULD KNOW ABOUT BONE MARROW TRANSPLANTATION (BMT):

1.     WHAT IS BMT? BMT for sickle cell is a procedure whereby cells from the bone marrow of a donor (ie someone who is Haemoglobin AA or AS) are transplanted into someone with Haemoglobin SS

2.    WHERE DO THE DONATED CELLS COME FROM?: Bone marrow cells are usually taken from the hip bone of the donor – who must have either Haemoglobin AA or AS. Usually, a brother or sister of the patient is preferred.

3.    BEFORE BMT CAN PROCEED, 3 MAJOR REQUIREMENTS MUST BE MET:

                                          i.    Identify the best donor (ie best match for the patient). Blood tests will determine who the best match is.

                                        ii.    Next, both the donor and the patient will have pre-transplant evaluations of the heart, lungs, kidney, etc.

                                       iii.    Counseling and interviews with a psychologist and a social worker also are an important part of the process.

4.    BMT must be done under sterile conditions and the recipient will be on admission in hospital for about 10 days before the transplant procedure and for up to 1 month after the procedure

5.    The actual BMT procedure is in the form of transfusion (just like the usual blood transfusion); the donated bone marrow is in a blood bag and passed into the patient’s body through a vein over a few hours.

6.    After the transfusion, the patient is monitored in hospital (on admission) over the period of about 1 month – under sterile conditions because they are vulnerable to infections at this time

7.    The patient continues to be monitored after discharge for several months to be sure the marrow has “taken”. 

8.    THE PATIENT IS CURED BECAUSE:

a.    They no longer have sickle cell crises and other symptoms of sickle cell

b.    They begin to live life normally like people who are Hb AA or AS – without frequent visits to the hospital, etc

c.    After the BMT procedure, when their genotype is checked by a blood test, they are found to have become Hb AA or AS – depending on the genotype of their donor.

9.    IMPORTANT!: Although the patient is cured - as evidenced by cessation of crises and other symptoms of sickle cell, as well blood test showing a change in their genotype, they need to be aware that they can still pass the Sickle Cell gene (S gene) to their children. This is important.

10.  BMT IS NOT RECOMMENDED FOR EVERYONE WITH SICKLE CELL:

a.    BMT is associated with risks and sometimes serious complications

b.    The doctors who carry out the procedure insist that a number of criteria are met

c.    The doctors will often consider the severity of the patient’s sickle cell condition vis a vis the risks of the procedure, before recommending it

11.  BMT IS EXPENSIVE: Most people travel abroad for the procedure and total cost of the procedure, air travel, food and board for about 6 months for patient and care giver add up to about a whopping N25m (twenty-five million Naira) per patient!

SICKLE CELL FOUNDATION NIGERIA OFFERS BONE MARROW TRANSPLANTATION (BMT)

For the past 4 years, 45 persons have benefited from the Sickle Cell Foundation Nigeria BMT Project. In collaboration with IME Rome, these 45 persons with sickle cell anaemia received BMT in Rome and are all cured today. The arrangement with IME Rome is for TECHNOLOGY TRANSFER, so the good news is that by the first quarter of 2016, BMT will be done here locally by the Foundation in collaboration with Lagos University Teaching Hospital (LUTH). Doctors and nurses have already gone for the necessary training in Rome.

Once we begin to provide BMT locally as stated above, the cost of the procedure will be a lot less and more Nigerians will be able to access it. The cost can be brought down to N5m per patient.

BMT IN UNIVERSITY OF BENIN TEACHING HOSPITAL (UBTH)

Dr. Bazuaye of UBTH has also performed about 3 BMTs for sickle cell successfully over the past 3 years at the teaching Hospital. Sickle Cell Foundation Nigeria and LUTH plan to work together with the Benin Team for the benefit of Nigerians with Sickle Cell.

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.



HOPE FOR SICKLE CELL PATIENTS:

Professor Olu Akinyanju, Chairman Sickle Cell Foundation, Nigeria stressing a point that people with Sickle Cell disorder can live long

Just like the poor cannot be eradicated from the society so are people with sickle cell. Every measure taken by councellors to stop people with the traits of sickle cell from marrying each other have failed, says the Chairman of Sickle Cell Foundation Nigeria, Professor

Olu Akinyanju. Since trying to reduce or stop people from giving birth to children with sickle cell through counselling has failed, Sickle Cell Foundation Nigeria has decided to take the responsibility of making sure that people who live with the disorder can live a normal life if they use any of the sickle cell centres accredited by the Foundation for their regular check up. According to Dr. Ajibola Sanda who is the Director of Clinical Services, Sickle Cell Foundation, the service is free. All it will cost the patient with sickle cell disorder to get a qualitaive medical care is the transport fare to and from the clinic. Whether rich or poor, Sickle Cell Foundation Nigeria has made life for people living with disorder worth it.

Dr. Ajibola Sanda Director of Clinical Services, Sickle Cell Foundation, says treament is free.

FOURTH ANNUAL GANI FAWEHINMI MEMORIAL LECTURE.

The foutrh annual Gani Fawehinmi memorial lecture took place at the Lagos Airport Hotel Ikeja Lagos Nigeria on September 5, 2013. Picture above shows

1.    the matriach of the Gani Fawehinmi dynasty, Ganiyat Fawehinmi

1.    People who are not satisfied with Governor Fashola`s policy on the Ban of commercial motorcycles used yhe event as a platform to register their dissatisfacton.



1.    Successor of late Gani Fawehinmi, Mohammed Fawehinmi



1.    National Chairman of national Conscience Party which was founded by Late Chief Gani Fawehinmi (NCP), Dr. Yinusa Tanko and Ganiyat Fawehinmi

1.    Cross section of the audience

1.    Dr. Joe Okei-Odumakin



1.    Former Petroleum minister, Prof. Tam David West




1.    Chairman of the Gani Fawehinmi Memorial Organization, Ayodele Akele



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.

PURPLE KROWN COLLEGE ENUGU WIN NNPC/SHELL CUP



PURPLE KROWN COLLEGE ENUGU WIN NNPC/SHELL CUP

The 15th edition of the NNPC/Shell Cup finished on a high as Purple Krown College, Enugu, defeated Government Secondary School (GSS), Wuse, Abuja, by 1-0 in an entertaining final played on Sunday, March 24, at the Teslim Balogun Stadium, Surulere, Lagos. Uzordima Emmanuel, who was eventually named the Most Valuable Player of the championship, scored the only goal of the game in the 50^th minute with a cool dispatch from the penalty spot.

In the first half, both teams put on a fine display of skill and attacking intent, and had numerous scoring opportunities, but lacked the decisive final touch in the 18-yard box. Like the first, the second half was also full of high end drama and action, as the two teams made tactical changes to find the winning touch, until Emmanuel’s decisive goal in the 50^th minute. From then on, the Wuse lads raised the tempo of their game and searched desperately for an equaliser, but the Enugu team proved to be the better side for most part of the game. In the end, there was going to be one winner. Purple Krown College held on to win their first trophy in Nigeria’s biggest school football competition. For their victory, the team won N2.5 million cash prize for sports development in the school, while each of the players received N50, 000. As runners-up, GSS Wuse went home with N1.4 million, while the players got N45, 000 each.

On their way to the final, Purple Krown College thrashed Government College, Ibadan, 4-1 in the first semi-final. While Government Secondary School, Wuse, qualified via a 9-8 penalty shootout win against Government Arabic College, Kano, in the second semi-final. The game had finished 1-1 at full time. With this historic win, Purple Krown also earned a place at the invitational school football competition in the United States of America, courtesy of the Nigeria School Sports Federation, NSSF.

In an also exciting third place play-off, Government Arabic College, Gwale, Kano, finished third with a comprehensive 3-0 win over Government College, Ibadan, Oyo. The Gwale lads also carted home N500,000 for their school’s sports development and N40,000 for each of the players. While the fourth placed team received N400,000 for their school and N35,000 for each of the players. The winning team, runners-up, third place and fourth placed teams all received certificates of participation.

“People have come to appreciate the quality of the game, year in, year out, because the quality has been improving. It has made us more proud than we have ever felt before,” said Mutiu Sunmonu, Country Chair of Shell Companies in Nigeria and Managing Director, Shell Petroleum Development Company, SPDC, on why the NNPC/Shell Cup is regarded as the biggest Secondary School football competition in Nigeria today. “The interesting aspect of this for the players is that they do not have to drop out of school to pursue a career in football. We are organising this at secondary schools so that our students will understand that education is very important and that the development of sports will make them complete. That is what we want to imbibe in the leaders of tomorrow,” said Engineer Ben Akaakar, Technical Assistant to Group Managing Director GMD, NNPC, Engineer Andrew Yakubu.

Special awards were also presented to outstanding players during the championship. Osayeme Joshua (Purple Krown College, Enugu) bagged the highest goal scorer award with six goals and Arinze Okpanpa (Purple Crown College, Enugu) was named the best defender. While Faisal Ali (Government Arabic College, Kano) won the best goalkeeper award and Malomo Taofeek (Government College Ibadan) was adjudged the best midfielder.

“We want to see players from the NNPC/Shell Cup represent Nigeria in major championship and we also want to see them grow academically because it is not all about football. Education is very important and that is why our theme is; football and education should go hand-in-hand,” said Sola Akinwale of Worldwide Sports Limited, consultants to the NNPC/Shell Cup. “The future is bright for these boys because they have potentials. The development is positive but the end result is priority. After here, what’s next for the lads? The National School Sports coaches should harness their potentials to form the platform for the national Under 16 teams,” said Kudur Umar, public relations officer, NSSF. Umar also added that the NNPC/Shell Cup will continue to be the breeding ground for talented football stars in Nigeria. Over the years, the competition has produced notable names such as Chinedu Obasi, Ambrose Vanzekin, and many others who have represented Nigeria in international football competitions.

Summary:

NNPC/Shell Cup 2013

Final

Purple Krown College, Enugu 1-0 Government Secondary School, Wuse, Abuja

Third Place match

Government Arabic College, Gwale, Kano 3-0 Government College, Ibadan, Oyo  Picture above :

Ememeka Chukwuma of Purple Crown College Enugu left, trying to dribble Ayinla Shamudeen of Government Secondary School Wuse in Abuja at the finals of the 15^th edition of the NNPC/SHELL cup which took place at the Tesilim Bakogun Stadium recently.




Nigerian Sports Minister, Bolaji Abdullahi presenting the 15^th edition NNPC/SHELL Cup to Oji Maurice the Captain of the victorious Purple Crown College of Enugu team.  




Players of Purple Crown College of Enugu, celrbrating their victory