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  • Foundation supports persons living with sickle cell

    Foundation supports persons living with sickle cell

    The Genes Foundation, an advocacy organization, has renewed its commitment to supporting individuals living with sickle cell disease (SCD) in Nigeria.

    The foundation’s relaunch event, which was held at the Oriental Hotel, recently,  in Lagos, stressed the need for collective action to address the burden faced by victims.

    Founded by the late Tosyn Bucknor, a passionate advocate for SCD awareness, the foundation continues her legacy under the leadership of her sister, Mrs. Funke Bucknor-Obruthe, and the board of trustees.

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    Bucknor-Obruthe said, “We recognize individuals with sickle cell as champions, not warriors,” said Mrs. Bucknor-Obruthe. “Our goal is to empower them to manage their condition effectively.”

    The foundation provides financial relief to indigent families, essential medications for hospitalized patients, educational support, counseling, and awareness programs. Key focus areas include medical, educational, and financial support to improve the quality of life for people living with SCD.

    Caleb Audu, a speaker at the event and a representative of the Sickle Cell Foundation, stressed the need for collaborative efforts to combat SCD in Nigeria.

  • Changing sickle cell narrative in Nigeria  

    Changing sickle cell narrative in Nigeria  

    She is the Sickle Cell Foundation boss with a passion for changing the narrative of sickle cell and people living with the condition. Meet Dr. Annette Akinsete, the National Director of Sickle Cell Foundation, Nigeria. Since 1994  she has risen gallantly to the burden of the sickle cell disorder in Nigeria, one estimated to be the largest in the world. In this chat, Akinsete speaks on her work, childhood, style and more, EVELYN OSAGIE writes

    My childhood ambition

    My ambition as a child was always to look after people. I could have been a teacher. I went to a Catholic Secondary School, so, at a point, I toyed with the idea of being a Reverend Sister. I could however tell there was that burning desire to look after people. My parents, however, encouraged me to study medicine.

     Growing up

    I did not grow up in one particular city. I was born in Ibadan. My dad was in the civil service in the old Western Region and we were later posted to Benin. After the war broke, we moved to our hometown in Asaba. It was horrific but I am thankful that my father, mother and all eight siblings survived the war and returned to Benin where we continued life. So, I attended Saint Maria Goretti Girls Grammar School in Benin City where I made a lot of good friends and was raised by very strict Reverend Sisters; in fact, I owe to those times a lot of the things I do today.

    I was daddy’s baby among all eight children. I could do no wrong. In fact, my dad he influenced me quite a lot. I made in life. He called me “Queen of Tonga”. My dad was an excellent, tall, fair and handsome gentleman. He passed away two decades ago; I wish he lived longer. I miss him.

     Myths and truths surrounding sickle cell

    Some people would say that the ailment is a spiritual problem or foisted on their child by negative forces. This is a myth and one of the myths that Sickle Cell Foundation (SCFN) sets out to dispel at every opportunity. It is a hereditary disorder. It is a genetic disorder. It is not caused by witchcraft and is neither Ogbanje nor Abiku.

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    So, studies have shown that the estimated under-5 mortality from sickle cell disorder in Nigeria is about 500 per 1000 live births. This is 4 times higher than children without sickle cell. That is why it is important for intending couples to ensure they pay special care to know about their blood group and genotypes. This is because sickle cell disorder is a hereditary condition and one must be aware and knowledgeable about the possibility of transmitting the genes to one’s offspring” A couple who are both carriers of the sickle gene (designated AS) have a 1 out of 4 chance – in every pregnancy – of having a child with sickle cell disorder (designated SS). So, the couple needs to be properly counseled about the risks involved in having children together and then they can make an informed decision themselves.

     My passion for sickle cell awareness

    Sickle cell is crying for help and support. At the Federal Ministry of Health, I was Director for HIV/AIDS for a number of years and I know that HIV/AIDS was very well resourced in terms of funding and human resources. I couldn’t say the same for non-communicable diseases; I was also Director for non-communicable diseases which encompassed hypertension, diabetes and sickle cell. So, when I retired, I knew I had to pitch my tent where I was needed more. And as I said, sickle cell was crying for help.

     Fighting sickle cell in Nigeria

    It is fulfilling to be able to make a difference. A gap was evident and that was why the SCFN was established in the first place. I think we are doing a great job in terms of awareness. Things have really improved compared to the time when people hid their children or considered them witches. More sickle cell patients are living till old age; in fact, we had a woman who died recently at 94.

     Breakthroughs in health sector and SCFN efforts on the ailment

    I often say that the future is bright for the sickle cell community.  A lot of work and research are going on in the sickle cell space so that we now have newer and more effective treatments including use of the drug Hydroxyurea which helps to reduce the severity and frequency of crises L-Glutamine and a number of others which all help to modify the disease.

    SCFN has established a Stem Cell Transplantation Centre in Lagos in partnership with Lagos University Teaching Hospital (LUTH) and the Vanderbilt University Medical Centre, Nashville, TN, USA. Stem Cell Transplantation is the internationally-approved cure for sickle cell disorder. There are other advancements that are in experimental stages including gene therapy/gene editing, for which (unlike the Stem Cell Transplantation), a stem cell donor is not required. Among other things, SCFN trains doctors and nurses and other health workers in the proper management of SCD, etc. The cure for sickle cell in form of bone marrow (Stem Cell) Transplantation (BMT): BMT is the cure for SCD and at the moment can only be accessed abroad. SCFN has set up a BMT Centre and so that Nigerians can access this cure for SCD locally.

     The SCFN, through its services, has done and continues to do a lot to improve the quality of life and reduce mortality of children living with sickle cell.  Research is big part of what the foundation does; we have a Research Desk Officer who coordinates our research activities – most of which are conducted in collaboration with partners – hematologists, sociologists and other specialists.

    In the area of diagnosis, there are also major advancements in terms of the technology being deployed to diagnose haemoglobinopathies in general – including sickle cell disorder. We now have a number of point-of-care testing kits out there which have improved the ease and speed of screening (including newborn screening) and diagnosis. Of course, we cannot forget the HPLC machine – which is the gold standard in the diagnosis of sickle cell and other haemoglobinopathies and which also quantifies how much of each genotype a subject has.

     My fashion style

    Classy and simple. I do not follow fashion trends; I am big on simplicity and class. I love timeless pieces. You will not catch me wearing a mini dress or dresses with plunged necklines. For me, that is not classy. So, as you can imagine for a girl who went to school with Reverend Sisters, to a large extent, I wear dresses that are decent. I also like toned down colours. My style is above all appropriate at all times.

     My escape

    Reading. Then I take walks because exercising is very important. I watch movies as well. Reading however remains my favourite pastime.

    My beauty routine

    Drinking of plenty water because beauty is from within.

     Project I’m working on

    The big project before us at this time is our stem cell transplantation programme. Right now, I have sent a number of nurses for training abroad and as soon as they return, we will dive straight into transplantation for the first couple of patients.

  • Group to NASS: revisit, enact sickle cell bill

    Group to NASS: revisit, enact sickle cell bill

    A sickle cell advocacy group, the Coalition of Sickle Cell NGOs, has urged the National Assembly to prioritise the enactment of the Sickle Cell Bill. 

    The appeal, intended to benefit individuals living with sickle cell disease and the broader Nigerian population, was announced in a statement in recognition of World Sickle Cell Day.

    The United Nations, during its 63rd General Assembly session in December 2008, identified sickle cell disease as a significant public health issue and one of the most prominent genetic disorders worldwide. 

    Subsequently, the UN designated June 19 as World Sickle Cell Day to increase global awareness, a tradition that has been observed annually since 2009.

    The advocates highlighted the history of the Sickle Cell Bill in Nigeria, noting that it was first debated in the Senate in 2021. 

    However, the bill has since stalled in the legislative process, failing to progress to the Federal House of Representatives.

    Sponsored by Senator Sam Egwu, the bill seeks to establish measures for the prevention, control, and management of sickle cell anemia.

    Founding Executive Director of the Sickle Cell Advocacy and Management Initiative and Chairperson of the Coalition of Sickle Cell NGOs, Ms. Toyin Adesola, emphasized the critical need for increased awareness about sickle cell disease. 

    She underscored the importance of collective action in raising awareness, particularly through initiatives like the Red Umbrella Walk held in various parts of Lagos and Nigeria.

    Adesola urged legislators to revisit and pass the Sickle Cell Bill, citing the significant human rights implications for parents and individuals living with the disease. 

    She recounted previous efforts by the Coalition of Sickle Cell NGOs to amend the bill in the Senate to address these concerns before it stalled in the House of Representatives. 

    Adesola criticized the Ministry of Health for not giving adequate attention to sickle cell disease, stressing the need for a focused approach to healthcare legislation.

     “There was a bill on the floor of the Senate some years ago that we had to intervene as Coalition of Sickle Cell NGOs because it stepped on human rights of not only the parents and parents-to-be but even persons living with sickle cell themselves. The Senate corrected some things and then moved it to the House of Reps, it was at this point that we didn’t hear anything again.

    “From the Ministry of Health, we keep pushing but they are telling us that we are not the only ones that they are taking care of and that there are other diseases. But if you carry such a mindset nothing will be done, you should take it one at a time. You can say we will do sickle cell now to this extent, then we will take cancer and do so and so. We know resources are limited but take one issue at a time, do it before you move on to another issue. Government should arise, you cannot continue to rely on NGOs.

    “I would like to tell our 360 members of the House of Reps that they should imagine if this person was your child. And I know that some of you have children who live with sickle cell but you are not telling it. You have the money to support them but what about those who don’t have that kind of money? This is not about someone else, it is about you, it is about us; it is about Nigeria. It concerns the productive population of Nigeria, the productive human resources of Nigeria who are intelligent, productive, and can do well for the country,” she said.

    Mrs. Omowunmi Odumosu, a mother of a seven-year-old boy with sickle cell, appealed to the government to address the rising costs of medication, which pose significant challenges for affected families. 

    She expressed gratitude for existing government efforts but called for increased support to ensure the well-being of children with sickle cell.

    “Our government, we beg you. We want to thank you for all that you are doing. We want you to do more. The medicines that we use are now costly. Getting it is also another problem. And if we don’t have the medicines, there can be problems. It is not our wish but God has given us these children and God that gave them to us will make them survive and succeed,” Odumosu said. 

    A medical professional who participated in the Red Umbrella Walk, Dr. Emeka Nwune highlighted the importance of genotype testing, particularly for those planning to marry. 

    He advocated for increased advocacy and the involvement of celebrities to reduce stigma and promote awareness. 

    Read Also: Rotary to end sickle cell, others

    Dr. Nwune also called on the government to implement policies that would ensure individuals with sickle cell have access to comprehensive healthcare and support.

    “In terms of management, advocacy is the first step. Genotype testing is crucial even if your parents told you your genotype, you still need to go ahead to check yourself in at least two to three places to confirm your correct genotype. Before settling down, know the genotype of the person you are settling with, this is to avoid giving birth to a child living with sickle cell. We can do more in terms of advocacy.

    “I noticed Nigerians love to listen to celebrities so if celebrities can lend their voice, it will help. If others like us who don’t live with sickle cell do not stigmatise and support persons with sickle cell, it would greatly help,” he said.

  • Rotary to end sickle cell, others

    Rotary to end sickle cell, others

    Pioneer President of District 9111 of Rotary International, Dr Oluwole Kukoyi, has reaffirmed the group’s stand to end sickle cell, cancer, maternal and infant mortality diseases.

    He said sickle cell disease is common in African family background. Treatment can manage symptoms, hence Rotary is building a sickle cell centre with modern equipment at State Hospital, Ota in Ogun State. This, will enhance testing and diagnosis capacity to reduce death rate, Kukoyi said.

    He pledged more commitment to seven areas of focus; “promoting peace building/conflict prevention; fighting disease; providing clean water, sanitation and hygiene; saving mothers and children; supporting education; growing local economies and protecting environment.”

    These areas, Kukoyi, a medical entrepreneur for four decades, reflect humanitarian issues and needs Rotarians are addressing.

    He spoke at a fundraising, award and his investiture at Lagos Sheraton Hotel, Ikeja.

    Kukoyi will supervise activities of the district for 365 days. He took over from District Governor, Mrs Ifeyinwa Ejezie.

    At the event were wife of former President, Mrs Bola Obasanjo; Ogun State Deputy Governor, Noimot Salako-Oyedele; Olota of Ota, Oba Abdulkabir Obalanlege; Senator Gbenga Kaka; Senator Lekan Mustapha; Senator Gbolahan Dada; Chief Executive Officer of Frenchurch Group, Olufemi Bakare; Dr Julie Adelusi-Adeluyi, among others.

    The programme featured cultural display, awards, induction of new members and book launch in honour of Kukoyi’s biography, achievement and philanthropy.

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    Kukoyi promised to provide a responsible leadership with greater impact and increased participation for the year.

    “I welcome Rotarians to a new experience, and celebration of a new birth. Today marks a milestone in Rotary journey. I am humbled and excited to lead District 9111…’’

    “I welcome all Rotarians to a sparkling New experience, a refreshing newness and celebration of a new birth. Today marks a historic milestone in Rotary journey. Am very humble and excited that I lead District 9111 to a new era of service, growth and impact. July 1st 2024 signals a fresh start and new chapter in Rotary story. We are United in quest for excellence and passion for service, ready to embrace challenges and seize opportunities. Future belongs to those who believe in the beauty of their dreams. We have imagined great things in service to humanity and we are defining our future by creating hope in the communities.

    “Our theme for this rotary year is “Irresistible Magic of Rotary” this is not just a slogan, it is the essence of whom we are and what we do. It is the spark that ignites our passion for service, glue that binds us together in fellowship and fuel that drives us to make a difference. The magic of Rotary is about transforming lives, communities, and world at large. It is the impact we make when we come together, United in our pursuit of excellence, smiles we bring to children’s faces, the hope we give to those in need and joy we experiencing in serving others,” DG Kukoyi, explained.

    He said his vision being the first D9111 governor is simple but very bold – “empowering Rotarians and enhancing impact. He vowed to strive deeply to make Rotary service organization of first choice, a beacon of hope and kindness in the communities.

    Dr Kukoyi noted that all good thing that has happened in District 9110 will be carried over to D9111 and they will be done at a higher scale.

    He commended his predecessor for running an open door policy, adding that his administration was built  on integrity, transparency and accountability, appealing to all Rotary members to continue leveraging on the twin pillars of trust and integrity which is the Core values of the humanitarian service organization.

    In her welcoming address, Chairman, installation committee, Mrs Funke Salau, said humanity is not just a lofty ideal but a practical guide of how lives should be lived, small act of kindness helping the needy when necessary and working together to address global challenges such as poverty, climate change and pandemics.

    She said this epoch making event is to serve as avenue to raise funds for the star project ‘building of sickle cell centre with newest technology and equipment’.

    According to her, the centre will provide confirmatory testing of newborns, screening exercise for sickle cell patient, genetic counseling among others and it will go along way to reduce or probably eradicate the disease in the society.

    She expressed the determination of the club to increase its impact, service to humanity and expand its reach through participation in various projects.

    She, therefore, solicited for moral and financial assistance concerning the capital base project from both government, individuals, corporate organizations, political stalwarts and captain of all industries to make the project a reality during this rotary service year. “Serving humanity is the best,” she added.

    Speaking at the event, IPDG Ejezie solicited more support for the new DG to enable him record success in his tenure.

    He noted that the District had achieved a lot in the last one year with charity projects across communities within its jurisdiction.

    While thanking the club members for finding him worthy to serve as district governor, called for members support for the present administration, saying the district would only record success through their cooperation.

    He said Rotary International as an international service organisation that had the purpose of bringing professional and business persons together to provide humanitarian services, encourage high ethical standards in all vocations and advance goodwill and peace around the world. Members certainly shared an uncommon comradeship that was needed to willingly give to charity, IPDG Ejezie, added.

    Engr Salako-Oyedele commended Rotary Clubs International for considering the well-being of common masses as most paramount to their core values.

    She said the emergence of Dr Kukoyi as Pioneer District 9112 Governor was not an accidental but based on his selfless service to humanity, noting that he has in various capacities, making significant contributions in making life meaningful to the less-priviledges in the society.

    He reiterated Ogun State Government stand in supporting every Rotary clubs projects which is meant to improve the life of the needy.

  • ‘Why we’re donating sickle cell centre to Ogun’

    ‘Why we’re donating sickle cell centre to Ogun’

    Come July 1, 2024, Dr Wole Kukoyi, Chief Medical Director at Ace Medical Clinics, Ota, Ogun State will be stepping out as the new Governor of the newly created Rotary International District 9111. The medical entrepreneur who has over 40years membership experience with the humanitarian society shares his plans with Joseph Eshanokpe.

    When did you join Rotary?

    My journey in Rotary has been one of interest and passion. I joined Rotary exactly 40 years ago. I had watched an interview on the NTA by the Doyen of the then District 911, Prince Julius Adelusi-Adeluyi.

    Not long after, I met the iconic gentleman and past Assistant Governor Leke Ibrahim, who introduced me to the Rotary Club of Ota in 1984. I became its president in 1990 and so far, it’s been a good experience.

    What is your vision for the new District 9111 ?

    Rotary District 9110 birthed  District 9111, a pioneer district, that puts a lot of responsibilities on us because we have to lay a good foundation. My vision is to put Rotary in the first position as a service organisation, so that those who want to join a service organisation will come to our district. We will employ the core values of Rotary. Integrity is one such that we will stress. Those who want to give us money can trust that we will spend it judiciously. For example, for over 60 years, Charity Navigator of the United States has been giving Rotary International (RI) partnership funding and first rating, because of the trust they have in us.

    Tell us about your Star Project.

    Our Star Project is to donate a well-furnished and equipped Sickle Cell Disease Centre to the Ogun State Government and also do projects in all the seven focal areas of Rotary, namely Health, Education and Literacy, Peace, Conflict prevention, among others. Besides, we want to build Rotarians so that they can carry themselves with pride and sense of worth and attract more people.

    Why did Rotary International adopt MAGIC as its theme for the year?

    This does not mean that we are magicians but rather we will be magical people. You know we do cataract surgeries. Thus when you turn darkness to light for somebody who has eye problems, that is magic. When you provide those with physical challenges with artificial limbs, that is magic. When we help the indigent by empowering them, that also is magic. Ditto when we give the illiterate a good education.

    Every penny we donate and every project we do in the communities will be a form of magic. And the magic will be so irresistible.

    How do you intend to promote continuity in your administration?

    Every good thing that has happened in District 9110 will be carried over to D9111. For example, sports; Rotary Sports Festival (ROSFEST) which is good in building our body and health management, will be done at a higher scale. The Care Givers Quarter donated to Lagos State University Teaching Hospital (LASUTH), Cancer Centre at O.O.U.T. H, Shagamu; Indo- Eye Centre, free surgery treatment of cataract at Airport Road, Lagos are to be effectively maintained, among others.

    How do you hope to generate fund for your projects?

    We will appeal to Rotarians and our friends in Nigeria and abroad.

    What should we expect from your team and administration?

    To let people trust us with their money, we will harp on integrity. We have been talking  about the three Ts – Treasure, Talent and Time. Also, integrity will be so important to us and must be added.

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    Besides, continuity is very important to us. That’s why we have the trioka – the District Governor ((DG), DG-elect and DG-nominee. All the decisions l will take must be endorsed by all of them. That’s our strategic plan.

    How do you intend to tackle the prevailing outbreak of cholera?

    You know that cholera is an epidemic and it comes with a bust. We will partner  the government agencies in Ogun and Lagos states to curtail it. However, we will do a lot of education to enable Nigerians to be aware of infectious diseases, because once people are educated on the  killer disease, they will know how to overcome it.

    Be that as it may, on peace building, we want to marry education with peace building. We are in consultation with the Olabisi Onabanjo University, Ogun State to develop a three-month certificate programme in Peace Building, Security and Conflict Prevention for non-Rotarians who are in the security sector. You can see that l am already covering two areas of Rotary.

    I must emphasise that peace building is germane to Rotary. We know that all over the world, there are pockets of violence and insecurity. And Rotary plays a vital role in training Rotary Fellows in seven universities all over the world. We want to have local component. We want to train Nigerians. Details will be unveiled shortly.

    You described yourself as a medical entrepreneur; what are your plans for your colleagues?

    Without being immodest, l have practised medicine for over 40 years and I thank God that l have had a successful practice. Interestingly, some of my colleagues are Rotarians, but many others are not and

    I will enjoin the latter to join us. For, in Rotary, they have ample opportunity to impact humanity. Of course we will form partnerships with the various health professional groups, such as the Nigeria Medical Association (NMA) and Association of Medical Practitioners. We will work together to improve health care indices. In relation to this, we have a very strong and active collaboration with Nigerian medical doctors based in the U.S., Association of Nigerian Physicians in America (ANPA). l am a honorary member of their association. They come home yearly to contribute to health care delivery. Indeed last year, they were here on a medical outreach. They will feature prominently in our Rotary District 9111.

    Two districts were created out of District 9110: D9111 and D9112. What happened to the mother district?

    The mother will always be the mother. That history can never be erased. D9111 and D9112 are brothers.

    However, by midnight of June 30, this year, D9110 will cease to exist. But it’s two children will continue to exist. Nothing will separate us. In the next few years, they also look forward to giving birth.

    You have a date with history on July 6. What should we expect?

    It is the installation of Dr. Kukoyi as the pioneer District 9111 Governor. It will be a big event, which will kick-start a movement that will touch all of us positively. We are expecting many dignitaries from the government and outside it as well as  Rotarians from abroad, which makes it an international event. There, l will unveil my plans for the Service Year. There will be fun, merriment and fellowship. We look forward to the participation of the media in this event because one of the things that we will do to improve our reach is good public imaging. Moreso, we shall reward media organisations for their partnership during our annual Rotary Humanitarian Reporting Awards programme.

  • Schools take part in Sickle Cell Day quiz

    Schools take part in Sickle Cell Day quiz

    To mark this year’s World Sickle Cell Day, 20 schools from the six educational districts in Lagos State participated in a quiz by Sickle Cell Foundation Nigeria (SCFN). 

    It aimed to educate school children about Sickle Cell Disease (SCD) and help them make informed decisions.

    Speaking at the event, founder of SCFN, Prof Olufemi Akinyanju, stressed importance of expanding screening efforts and increasing public awareness about sickle cell disease.

     “We must offer free screenings and educate more people about sickle cell disease to improve early diagnosis and treatment outcomes,” he said.

     Akinyanju shared inspiration behind SCFN, noting his observations during his studies in England, where he rarely encountered sickle cell disease.

    On returning to Nigeria and working at Lagos University Teaching Hospital (LUTH), he noticed women bringing chronically ill children without understanding their condition.

    This gap in awareness and specialiased care motivated him. National Director and Chief Executive Officer, Dr. Annette Akinsete, highlighted significance of the day.

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     “We celebrate every year to raise awareness and educate the public about sickle cell disease. Today’s quiz competition is part of efforts, recognising young people are key change agents,” she explained.

     Akinsete stressed importance of early education about SCD, noting challenges couples face discovering they are carriers of the sickle cell gene.

     “Many couples face difficulties on learning they are carriers, sometimes barred from marriage by churches. By educating young people early, we help them make informed choices,” she said. “pupils insightful questions show their eagerness to learn.”

     In addition, SCFN is partnering Ministry of Education to set up Sickle Cell clubs in schools. 

    She urged a unified global approach to tackling SCD.

    “We are working with WHO to address SCD same as HIV/AIDS and malaria.

    Nigeria, with highest burden of SCD must lead this effort.”

     Akinsete urged greater government involvement and collaboration.

    “Our vision at SCFN is to alleviate the burden of sickle cell in Nigeria. This is a national emergency. While the government has made strides, much more is needed. We urge them to work closely with us and other stakeholders to implement and fund effective policies. It’s not just about financial resources but also the political will to drive meaningful change.” She linked the fight against sickle cell disease to broader health goals.

     “Achieving Sustainable Development Goal 3, which focuses on health and reducing child mortality, is closely tied to addressing sickle cell disease.

     In Nigeria, where 150,000 babies are born with sickle cell each year and many die before age five, tackling this condition is crucial.”

     The Director of Curriculum and Studies, Shijuade Idowu-Tiamiyu, represented by Toyin Agbabiaka, underscored the educational impact of the quiz competition.

     “This platform is crucial for creating awareness among children, preparing them to make informed choices about their genotype partners in the future. The knowledge gained will extend beyond the participants, as they will educate their families and friends about sickle cell disease,” she said.

     Principal, Medical Laboratory Scientist and Lagos State Laboratory Focal Person, Beatrice Adeyemo, highlighted the need for widespread genotype screening and education.

     “There is a need to create more awareness, which SCFN is actively addressing. We advocate for timely genotype testing and education about sickle cell disease to prevent complications associated with this genetic condition,” Adeyemo stated. Adeyemo outlined a state-wide newborn screening program that prioritizes the mother’s genetic status.

    “If the mother is not AA, we screen the baby regardless of the father’s genotype. This proactive approach ensures that any baby identified as having SS is referred to a sickle cell clinic immediately to prevent the first sickle cell crisis before six months of age.

     These screenings are provided free of charge.” Lagos State employs various communication channels, including distributing flyers and posters, and conducting campaigns in markets, churches, and mosques.

     “We urge communities to ensure members are screened for their genotype before marriage. While sickle cell disease is not a death sentence, it is a condition that requires careful management.

     Through our campaigns, we have screened more than fifty thousand individuals, including school children.” Adeyemo noted the positive outcomes of these efforts.

     “Based on our database, we currently have over 23 babies identified as SS or SC who are under our care. These early interventions are crucial in managing their health and preventing severe complications.”

  • Tola ‘the sickle cell warrior’ turns pain to passion

    Tola ‘the sickle cell warrior’ turns pain to passion

    Some may call her a survivor. But she dubs herself a ‘warrior’. After a near-death experience, she turned her pain into a passion. Meet United Kingdom-based property lawyer Tola Olatunji, the sickle cell ‘warrior’, who is currently in Nigeria to inspire and empower people living with the condition.EVELYN OSAGIE writes on her pain-to- passion story and more

    Tola Olatunji is a fighter. And it is not because she is a lawyer. Tola has had to brace up against the challenge of living with sickle cell anaemia to become an accomplished lawyer, mother, founder of Rock Bottom Sickle Cell Initiative and author of Rock Bottom. Rock Bottom is a memoir inspired by her personal experience as a sickle cell survivor, especially from her last crisis which was further complicated in the wake of the COVID-19 pandemic. Bedridden for three months, the author escaped death only by the skin of her teeth.

    Her beginning

    Tola, originally from Benin City, Nigeria, now resides in the United Kingdom where she works as a property lawyer. Growing up with sickle cell and three siblings, two of whom are sickle cell warriors, Tola has witnessed firsthand the challenges of living with the disease. 

    Read Also:Sickle cell: Nigerian surgeon develops compression therapy for leg ulcers

    Hear her: “It’s a constant fight daily. Fighting it daily is not easy. You have to wake up every day to fight. It means having to choose each day not to allow the pain to keep you down.  For instance, growing up in Benin, I don’t remember being in class at all during my primary school days. I was always sick. I don’t remember attending any sort of exams; I was always doing my exams at home. And I was always in and out of hospital a lot. To have come this far with care and support of my family, I can say I’m God’s favourite child. But you must say ‘no, it won’t stop me today’, each and every day.”

    And having to fight and win each day, like Tola does, is no mean feat. Little wonder then that she dubs herself a ‘warrior’.

    “I took my drugs, fought against it and I am here. When one is constantly fighting, it means one is a warrior,” she said.

    After a near-death experience that left her believing she might never walk again, Tola had to relearn how to walk, a journey that profoundly impacted her perspective on life. “It was during the COVID-19 pandemic. I was in law school then. It was very difficult. I had COVID and bedridden for three months. I had to learn the things that my body can take.”

    Her inspiration

    Motivated by her struggles, Tola felt compelled to share her story by writing Rock Bottom, thereby offering encouragement to others facing similar hardships.

    And while recognising the lack of sickle cell foundations in her hometown of Benin City, she saw an opportunity to raise awareness and provide support to those in need by establishing Rock Bottom Sickle Cell Initiative.

    Last Saturday, May 4, she formally unveiled the book and her non-profit to a selected audience at the Horatio Marquee, Akhionbare Street, GRA, Benin City, by 10am. Partnering with Edo State Centre for Women and Youth Development on unveiling of her initiative, the event was attended by dignitaries led by Edo State’s First Lady Betsy Obaseki, who was the special guest of honour.

    Her foundation

    Her non-profit focuses on providing supports for sickle cell warriors. Through her dedication and passion, Tola strives to touch lives and make a difference in the lives of sickle cell warriors, ensuring they are not limited by their condition. Her mission, she says, is not only to educate others about sickle cell disease but also to build a community where warriors feel understood and empowered.

    “I want to reach out to a lot of warriors. I created the foundation to help people like me. That experience made me think there are a lot of people going through the same. We don’t have to live a limited lifestyle because of sickle cell. We have to live our full lives. There are people living their full lives. My siblings and I are doing well.”

    Tola says she believes in collective effort in making a difference in the lives of people with sickle cell. Besides her collaboration with Edo State, she is also working with others, such Dr. Suchitra Kataria, the Singapore-based specialist behind the “My Sickle Care” App. Such a move demonstrates a commitment to leveraging technology for better access to diagnoses and care worldwide. Their joint efforts in SCD education and counseling with the government and UNICEF in parts of India highlight a global approach to tackling the challenges of sickle cell disease.

    According to her, the support of the First Lady underscored the importance of community engagement and government involvement in addressing sickle cell disease. By facilitating connections between stakeholders and contributing to efforts to reduce the prevalence of the disease, “Her Excellency’s collaboration would strengthen the foundation’s impact at a local level. With such partnerships in place, Rock Bottom Sickle Cell Initiative is poised to make significant strides in its mission to support sickle cell warriors and raise awareness about the disease”.

    Her book

    Tola’s courage knows no bounds. Tola’s journey is a testament to the power of resilience and the impact one person can have in creating positive change. Despite the pain and challenges she faced, she bravely chronicled her journey in her book, Rock Bottom, inviting readers to experience her trials and triumphs alongside her. Sharing such deeply personal experience requires immense bravery, but Tola’s determination to inspire and uplift others drove her to relive her most difficult moments.

    The book raises awareness by offering eye-opening tips on sickle cell anemia, inspiring warriors of the disease and enlightening the public that being a victim of sickle cell isn’t a death sentence.

    “In this tell-all book, Tola lays bare the struggles of sickle cell warriors, the UK medical system, the importance of family and friends and how much is hidden in the details of what is required to recover from a near-death experience” says one of the blurbs.

    In a media chat with reporters in Lagos, Tola spoke of the inspiration behind the book and the reason for having the launch in Benin — she was born and bred in the ancient city.

    “So, I wrote the book because I wanted to tell my story. I decided to write the book while I was recovering from hospital. So they had discharged me and I thought, you know what?, it’s good to tell my story because it was a life- changing experience for me, and maybe somebody’s going through the same experience. This was in 2022, a few months after I got out of hospital”, the property lawyer said.

  • Experts urge Fed Govt to enact law making sickle cell genotype testing mandatory for new-borns

    Experts urge Fed Govt to enact law making sickle cell genotype testing mandatory for new-borns

    Dr. Ngozika Orjioke, a Nigerian-American critical care and pulmonary care physician, and co-founder of CMG Global Foundation in Atlanta, USA, is advocating for legislative action mandating sickle cell genotype testing for new-borns in Nigeria. Speaking at a ceremony in Lagos where CMG Global Foundation donated Transcranial Doppler Ultrasound (TCD) equipment to The Sickle Cell Foundation Nigeria, Dr. Orjioke emphasised the importance of early detection and improved management of sickle cell disease.

    The foundation, established by four Atlanta-based physicians – Dr. Akinloye Makanjuola, Dr. Alawode Oladele, Dr. Victor Okeh and Dr Orjioke – aims to enhance healthcare in Nigeria through partnerships with governmental and private entities. They focus on leveraging existing resources to address healthcare disparities, especially in communities lacking adequate access to medical services. Transcranial Doppler ultrasound equipment, donated to detect and prevent stroke in children with sickle cell disorder, highlights CMG Global Foundation’s commitment to tackling health challenges.

    Dr. Orjioke underscores the foundation’s collaboration with Atlanta-Lagos Sister Cities projects and the Sickle Cell Foundation in Georgia to reshape the narrative of sickle cell disease in Nigeria. Their vision extends to making TCD widely accessible across Nigeria’s six geopolitical zones, with plans for centralised training through a partnership with Sky Vascular, a US-based organisation. By advocating for legislative change and fostering partnerships, CMG Global Foundation endeavours to significantly impac t sickle cell disease management and improve healthcare accessibility in Nigeria. CMG Global Foundation has announced plans to extend its impact beyond the initial donation of Transcranial Doppler Ultrasound equipment and training. In the coming months, the foundation said it will continue its efforts by donating additional equipment and providing training to healthcare facilities across Nigeria.

    Expressing gratitude for the donation, Dr. Annette Akinsete, CEO of the Sickle Cell Foundation Nigeria, highlighted the significant progress made by the foundation since its establishment in 1994. Initially focused on advocating for the prevention of sickle cell disease, particularly among prospective couples, the foundation has since expanded its scope to encompass treatment and management, with a focus on achieving a cure. Dr. Akinsete’s acknowledgment underscores the importance of collaborative efforts between organisations like CMG Global Foundation and the Sickle Cell Foundation Nigeria in addressing healthcare challenges and advancing medical care in Nigeria. “ Yes we can now cure sickle cell disorder in children 100 percent because we have bone marrow transplant centre, which is domiciled in the Lagos University Teaching Hospital(LUTH) just across the road being a facility that requires 24-hour care just like an ICU,” Dr. Akinsete explained.

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    Dr. Akinsete emphasised Nigeria’s significant burden of sickle cell disorder, dubbing the nation as the “global headquarters” of the condition. With over 40 million Nigerians carrying the sickle cell disorder gene (Hb As) and approximately 150,000 children born annually with sickle cell anaemia (Hb SS), the prevalence of the disease is staggering. Tragically, many of these children succumb to the illness before reaching the age of five, primarily due to limited access to early diagnosis and appropriate care. Despite the grim statistics, Dr. Akinsete stressed that sickle cell disorder is no longer a death sentence. With early diagnosis and proper management, the disease can be effectively controlled and even cured, offering hope to affected individuals and their families. She urged intending couples to avail themselves of the medical facilities and expertise provided by the Sickle Cell Foundation for pre-marital genotype testing, retesting and counselling. By taking proactive measures, couples can avoid the emotional and financial toll associated with having children affected by sickle cell disorder, she advised.

    Dr. Akinsete called upon religious bodies, traditional leaders and opinion influencers to join the Sickle Cell Foundation in advocating for widespread pre-marital genotype testing and counselling. By raising awareness and promoting preventive measures, including informed family planning decisions, these influential stakeholders can play a pivotal role in reducing the incidence of sickle cell disorder in Nigeria. Through collective action and community support, the nation can take significant strides towards mitigating the impact of this debilitating condition and ensuring a brighter future for generations to come.

  • 46-year-old living with sickle cell needs N2.8m for hip surgery

    46-year-old living with sickle cell needs N2.8m for hip surgery

    A 46-year-old petty trader, Mrs. Sarah Oguntola, living with Sickle Cell Disease (SCA), has appealed for public financial assistance for a hip surgery.

    According to her, doctors said N2.8 million is required for avascular necrosis of the hip surgery at the Lagos University Teaching Hospital (LUTH), Idi-Araba, Lagos.

    Oguntola said her hip problem started 18 years ago but worsened after birthing two children through caesarean section.

    She said: “Walking became unbearable in 2023; I had to visit the LUTH Radio diagnosis Department for a checkup.

    “I’m living with sickle cell disease. I can’t walk very well now, and the doctor said I have to do surgery because it’s getting worse every day.”

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    According to the mother of two, her husband whose genotype is AA, left her because of her hip deterioration coupled with her ceaseless crisis as a person living with sickle cell disease.

    “I’m still with my children. But, he only pays their school fees,” she recounted.

    According to an August 24, 2023 medical report signed by LUTH’s Radio Diagnosis Consultant, Doctor Caleb Yakubu, Mrs. Oguntola has avascular necrosis of both femoral heads (Ficat /arlet classification stage IV) Degenerative spine disease.

    She can be reached on 08057629906. Money can also be donated to: Account Name: Sherifat Oguntola and number: 3021715445 (First Bank).

  • Don: we’re epicentre of global sickle cell anaemia

    Don: we’re epicentre of global sickle cell anaemia

    • ‘100,000 sick babies born’
    • ’Rating in breast cancer shameful’

    A professor of Biophysical Chemistry at Olabisi Onabanjo University (OOU) at Ago-Iwoye in Ogun State, Prof. Najeem Babarinde, has described Nigeria as global epicentre of sickle cell anaemia.

    Pharmacology and Clinical Pharmacy professor, Noel Wannang, also decried Nigeria’s rating as first in breast cancer disease in West Africa.

    Both experts, who spoke at different fora, expressed worry about the prime positions Nigeria occupies in prevalence of those diseases.

    Babarinde said research had put the birth figure between 100,000 and 150,000 sickle-celled babies every year.

    The expert noted the number represents 30 per cent of global sickle cell birth rate.

    He expressed worry about 50 to 80 per cent of the estimated infants born yearly in Nigeria with sickle cell disease die before they attain age five.

    Babarinde urged the Federal Government to make pre-marital Genotype Compatibility Test (GCT) compulsory.

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    The don, who spoke yesterday while delivering a lecture: The Molecules Within Us: Structure, Survival and Society, during OOU’s 113th inaugural lecture at Ago-Iwoye, sought enactment of a law to make pre-marital GCT compulsory.

    “Government should make pre-marital Genotype Compatibility Test (GCT) compulsory. A law should be enacted to make pre-marital Genotype Compatibility Test compulsory. Such genotype compatibility tests will ensure children suffering from sickle cell anaemia are not born,” he said.

    Babarinde added it would also checkmate criminal and unethical practice of child swapping in the labour room by unscrupulous paramedics.

    For Wannang, who spoke during the Pharmacy Week of Akwa Ibom State chapter of Pharmaceutical Society of Nigeria (PSN) yesterday in Uyo, the state capital, regretted  rise in breast cancer.

    He noted the country is second only to Niger Republic in infant mortality.

    Addressing participants at the event, with the theme: Pharmacists Strengthening the Health Systems, Wannang, council member of West African Postgraduate College of Pharmacy, said health outcomes remained poor, despite higher expenditure since 2001.

    The don said better outcomes are found in countries of lower expenditure.

    He said: “Life expectancy in Nigeria stands at 60 years for men and 64 for women. Infant mortality stands at 54.74 deaths per 1,000 live births, which places Nigeria only second to Niger Republic.”

    Wannang highlighted non-natal mortality rate globally, stressing with 640 daily deaths, Nigeria ranks second to India.

    He added: “Maternal mortality rate stagnated at 290,000 annually since 2015. It is sad to say India and Nigeria rank first and second.”

    The don urged pharmacists to strengthen health system to enable Nigeria achieve more equitable and sustainable improvements.

    He said: “Pharmacists should transform practice, science and education, and workforce. They should acquire skills to lead and change the healthcare system.

    “They should develop models for patient safety. There is no health without drugs or hospital with prayers department.”