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Tag: SICKLE CELL

  • How I lost my job because of sickle cell – Patient

    How I lost my job because of sickle cell – Patient

    Mrs Opeyemi Afolabi, a sickle cell disorder (SCD) patient, has narrated how she lost a job because someone told her employer she had the disorder. Afolabi disclosed this while sharing her experience on Saturday in Lagos.

    She was among the no fewer than 300 SCD patients at the Grand Finale of the “Project Empower A Warrior 3.0”, organised by the Crimson Bow Sickle Cell Initiative, a non-profit organisation.

    The theme of the empowerment programme was: “Health and Wealth: Balancing Entrepreneurship in Sickle Cell”.

    Afolabi, however, urged  people  with the disorder to believe in themselves and not be confirmed or intimidated.

    The entrepreneur advised all persons with sickle cell to be hard-working with determination and resilience, to make impact, while also prioritising their health.

    She said: “You must prioritise your health.

    “Don’t bite more than you can chew. You need to understand your body, strength and weakness, while engaging in entrepreneurship.”

    Also sharing experiences, Mr Oluwagbohunmi Dada, an entrepreneur who is living with sickle cell anaemia, said the disorder had not received required attention in the country.

    “I’m here because I actually do have sickle cell. I am a warrior. I am here today to encourage other people that, it (sickle cell anaemia) is not a death sentence.

    “It is not something to be afraid of or to say that you are going to stop living. I have had a very decent career and I am married with kids.

    “I run a business as well. So, sickle cell does not necessarily mean that you are to be confined or limited into a particular space,” he urged.

    According to him, much more is needed to be done in the country to ease the crises or the issues that confront patients regularly.

    “In different places in the world, there is government funded research; there is private medical research to be able to develop, solutions, drugs to be able to help,” Dada said.

    He urged the sickle cell patients to get involved in entrepreneurship without underrating themselves to navigate the current economic condition.

    “Please, do something and put your energy into entrepreneurship. Nothing is easy upon the earth. Focus on your business.

    “This will help you to solve many problems. Don’t have any shame, believe in yourself and never allow anyone to write you off,” he said.

    The Founder and Chief Executive Officer of Crimson Bow, Miss Timi Edwin, urged the patients to take away worries and give attention to quality health and entrepreneurship to survive current economic challenges.

    Edwin, who noted that the Lagos State Government had been supportive of the cause of sickle cell, called for more efforts to make patients live a normal life.

    Also speaking, Mrs Folashade Shinkaye, the Chairperson of Crimson Bow Sickle Cell Initiative, said that building up patients in entrepreneurship had become imperative.

    The Guest Lecturer at the event, Mr Gabriel Omin, urged patients not to underrate themselves, but engage in profitable business, while not jeopardising their health.

    Omin, a Business Consultant, urged the patients to know what to do and to make research before venturing into any business.

    Cautioning against stress as sickle cell patients in business , Omin said that too much stress could trigger crisis, advising  “Know your limits and work within them.”

    The organisers empowered no fewer than 250 people living with sickle cell disorder with various entrepreneurial skills and giving start up grants for outstanding ones.

  • ‘I was attacked, abused ’ – Adekunle Gold speaks on battle with Sickle Cell

    ‘I was attacked, abused ’ – Adekunle Gold speaks on battle with Sickle Cell

    Nigerian singer, Adekunle Gold, has gone down memory lane remembering how he was attacked and abused for publicly speaking about his struggle with sickle cell disease.

    TheNewsGuru.com (TNG) reports that the ‘Orente’ crooner, during a recent interview with CNN, said he decided to create awareness about sickle cell disease after summoning the courage to speak.

    The singer, who noted that he has been aware of his ailment since he was a child, said he’s on a mission to make people living with sickle cell feel safe and feel they have support.

    He said, “I want people living with sickle cell to feel safe, to feel like they have help and support.

    “They call you a sickler… Recently, when I talked about it [my struggle with sickle cell] on the song [‘5-star’], I saw a lot of tweets from people attacking and abusing me.

    “I’m speaking about sickle cell disease now because I just got the courage to come out and speak up openly about it. A lot of people can’t share their stories like I can.

    “I’ve known about my sickle cell disease all my life. I knew since I was a child that I couldn’t do certain things. They said, ‘You know you have sickle cell, you can’t play football in the rain just like your peers.’ And I was like, ‘No, I want to play.’ I’ve always been rebellious.

    “I’ve known about my sickle cell disease all my life because growing up, I had crises every time. I was in the hospital back-to-back.

    “As a child, I constantly put myself in situations that made me sick. And it affected me a lot. For example, I’m not supposed to be in the rain, so what happened to me was that I would have pains in my joints from being in the rain. But I always knew that I didn’t want this thing [sickle cell] to define me.”

  • Why you should know your child’s genotype early

    Why you should know your child’s genotype early

    Dr Adebukola Orolu, a Consultation Haematologist at the Alimosho General Hospital, Igando, Lagos, has urged parents to know their children’s genotype from a tender age to reduce sickle anaemia mortality rate.

    Orolu, the Head of Haematology Department in the hospital, said this on Monday in Lagos at a programme to sensitise students on sickle cell disorder, held at Igando Senior High School, Lagos.

    World Sickle Cell Day is observed every June 19 globally to raise awareness about sickle cell anaemia (SCA) and its impact on individuals, families and communities worldwide.

    Sickle cell disease (SCD) is a genetic blood disorder in which abnormal red blood cells take on a crescent or sickle shape and these irregularly shaped cells cause blockages in blood vessels resulting in various health problems.

    Orolu said:  “Close to 150,000 children are born with sickle cell disease in Nigeria and this is a big health challenge.

    “We want Nigerians to know their genotype and that of their children at a tender age to commence care for  children with SCD on time and prevent other health issues that may arise in nearest future.

    “The Lagos State Government has already started newborn screening in all the general hospitals in the state so that children with sickle cell can be cared for.

    “Some parent don’t know their children’s genotype until they are over five years and more.

    “If all the necessary care is given at a little age, the mortality rate for under-five sickle cell carriers will reduce”.

    The Consultant added that students in secondary schools should also be aware of their genotypes in order to guard them.

    “The reason why we are having this programme here is because a lot of our students don’t know their genotype and they have attained puberty.

    “This is where sexual education comes in, so that they will take the right decision when they are ready for any relationship in the nearest future or marriage,” she said.

    She urged intending couples to seek medical advise before getting married in order to break the chain of sickle cell disease in the country.

    She advised sickle cell patients to take their medication regularly, eat the right proportion of food, fruit vegetables and take a lot of water to help reduce complications.

    Speaking also, Dr Ayodapo Soyinka, the Medical Director of the hospital said the programme was put together to create awareness about the disease, noting that people with SCD should not be discriminated against.

    Soyinka, represented by Dr Jane Bakare, the HOD of Medicine Department of the facility, urged the students to take the information back to their parents, communities and friends to know there Genotype.

    Wisdom Irueghe and Badmus Labeebah, both SS2 students of the school, commended the hospital for educating them on the importance of knowing their genotype and sickle cell disease.

  • I lived with a sickness no one around me understood – Adekunle Gold reveals

    I lived with a sickness no one around me understood – Adekunle Gold reveals

    Popular Nigerian singer, Adekunle Gold has revealed he battled with sickle cell anemia from birth and how frustrating and painful it was at some point in his life.

    In an intimate letter to fans, Adekunle stated that at a stage, his family couldn’t afford the hospital bills so he had to endure the pain.

    He wrote: “It feels liberating to finally be able to share this part of my life with you, to finally be able to speak my truth. When I talk about how I struggled to get to where I am today, I need you to know that my struggle was real. I was born with sickle cell disease. It was life and death, it was physical, mental, financial, you name it and I went through it all. It was tough, painful, and frustrating. I lived with a sickness no one around me understood, I lived with restrictions all my childhood.

    “I wasn’t able to join some of the most minor child play and liberating activities like going out in the rain. The times when I insisted and rebelled against my parent’s orders and went out in the rain, I would end up having a crisis. The nights were painful and lonely, nights that no one could help me get through. It was just me, God, and my mind. The pains and shivers were unbearable.

    “They always came in the night, when my family had no means to transport me to a hospital. We simply couldn’t afford the constant hospital bills so I had no choice but to endure the pain.

    “My mum wanted me to be well, she did her best. She took me to all the churches she could find, I’m grateful for her because she saw a future for me.

    “A future where no illness or sickness could hold me back from my purpose. From the life, I was destined to live.

    “Sickle cell disease took away my freedom, my childhood. I lost friends, a lot of them. Some didn’t understand the restrictions and rules I had to live by, some just didn’t want to deal with my Illness or thought it was a nasty or contagious disease that they could catch. I was a burden for some. Living with sickle cell is far from living a normal life.

    “One of the most intense crises I had was at the age of 20, I remember laying in my bed in the middle of the night asking for an end to it all. I begged God to take my life away because I couldn’t understand what I did to deserve the pain my body and mind were under. As usual with sickle crisis after some days, the pain subsided and God asked me; “That end you begged me for, do you still want it?” Of course, I said no and that’s when everything changed for me. That’s when I realized that I had been given another opportunity to live my dreams and to show those that mocked me that sickle cell anemia was never going to end me, that it was never going to hold me back from my dreams and aspirations.

    “My body caves in once in a while, and some symptoms come back but what this disease has taught me is resilience. Sickle cell anemia gave me hope, made me tough, gave me the discipline I needed to be who I am today, and built my character. I mean I went through a whole 5 weeks of back-to-back performances and didn’t fall sick. Grace.

    “My mind and body were challenged and I’m stronger, more determined, and ready to take on the world. I’m ready for Adekunle Gold Supremacy, I’m ready to live and enjoy the 5 Star life that I deserve, that my body toiled for.

    “I’m sharing my testimony with you because I hope that you can find strength in my truth. Some ailments hold us back but I’m thankful this hasn’t. I want to encourage you in whatever it is you’re going through, know that there is hope. You are strong and you must not give up. YOU CAN DO THIS!

    “Victory lies at the end for you just as it did for me.

    “If you know anyone going through any struggle, physical, health, or mental. Be kind, and show compassion. In fact, be kind to everyone, you just never know what they’re dealing with privately. Be supportive, be gentle, and love endlessly.

    “If you are a sickler, know that the disease does not define you. Don’t allow it to limit your dreams or cap your potential. Spread your wings and dream big! Hope to see you soaring in the big skies.

    “All my love.”

  • I need a husband urgently – Eucharia Anunobi cries out

    I need a husband urgently – Eucharia Anunobi cries out

    Popular veteran Nollywood actress, Eucharia Anunobi has cried out, saying she needs a husband urgently.

    TheNewsGuru.com (TNG) reports Eucharia to have said, “I need a man that will marry me urgently”.

    The veteran Nollywood actress made this known in a recent interview with BBC Igbo.

    Recall that the 56-year-old screen diva was married to her ex-husband, Charles Ekwu for nine years but the marriage crashed in 2009.

    Their union produced a son, Raymond, who sadly passed away in 2017 from sickle cell related complications at age 15.

    Speaking about her need for a husband, Eucharia said, “Please, I use this opportunity and tell the world that I want to marry urgently. A great man should show himself and put a ring on this finger of mine.

    “My specification is a man who is God-fearing and handsome. He must be up to the task, having everything that makes a man male. You must be complete, that’s all I can say”.

    Despite stiff denial, a video of Eucharia with her alleged lover, Lucky Oparah recently surfaced on social media.

    It was alleged that she sent Oparah poetic love messages via text and Whatsapp, expressing her deep feelings, fuelling the rumoured relationship between them.

    The message reads; “HAPPY BIRTHDAY my love. I hope you have a wonderful birthday today. You have made my life interesting and special. Thank you for being in my life, I love you always my love. Your birthday card is below and your gift is in your bank. Love You Lucky”, she reportedly wrote to him on his birthday”.

    However, in one interview, the veteran actress denied she was in love with Oparah.

    Following the interview, the video of Eucharia resting her head on the young actor made rounds on social media. Oparah was seen in the video making inaudible sounds into Eucharia’s ears.

    The actress was seen sitting side by side with the young actor who had his hands around her while having a conversation with her.

  • Bill for compulsory HIV, hepatitis, sickle cell test passes second reading in Zamfara assembly

    Bill for compulsory HIV, hepatitis, sickle cell test passes second reading in Zamfara assembly

    A private member’s bill to provide a law for compulsory free pregnancy, HIV/AIDS, hepatitis, sickle cell tests, before marriage in the state, has scaled its second reading at the Zamfara House Assembly.

    This was contained in a statement issued in Gusau, on Thursday, by Malam Mustafa Jafaru-Kaura the Director- General, Press Affairs and Public Relations of the house.

    Jafaru-Kaura said that the house considered the bill, which also included prohibition of all forms of discrimination and stigmatization, against those who tested positive in the state and for other related matters 2021.

    The private bill was sponsored by Yusuf Kanoma (APC, Maru North).

    Presenting the bill before the house at plenary on Thursday, Kanoma urged members of the house to support the motion on the bill.

    After long deliberations on the matter by the lawmakers, the Deputy Speaker, Alhaji Musa Bawa, who presided over the plenary, said the bill should be allowed to scale its second reading, considering its importance, in protecting the lives of the people.

    “As lawmakers, we must ensure effective laws to guarantee good health care delivery for our people”, he said.

    After giving the bill its second reading by the house, the Deputy Speaker directed the House Committee on Health and Human Medicine to scrutinise the bill and report back to the house in one month.

    He also warned that a public hearing must be conducted to seek the opinions of Islamic scholars and opinion leaders on the bill.

  • BBNaija: Nigerians blast Erica as Laycon’s genotype sparks controversy

    BBNaija: Nigerians blast Erica as Laycon’s genotype sparks controversy

    Big Brother Naija housemate Laycon’s disclosure that he is of the Sickle Cell genotype has spawned a lot of controversy on social media.

    The rapper revealed that he is of the sickle cell genotype during a conversation with Dorathy and Vee.

    According to Laycon: “My blood group is Sickle Cell, I don’t like to tell people my genotype because I feel they will think I’m sick.”

    Most viewers thought he had disclosed it to Erica, who was disqualified after an outburst with Laycon and she used it against him during the rift.

    Others, however, think he might be using it to secure ‘compassion votes’.

    Here are some of the comments TheNewsGuru gathered on social media.

    @HARRYbrixx: Laycon just won BBNAIJA. This his SC story will sell out

    @PelumiBenson: Is this news about Laycon being SC true… He didn’t disclose this in the house na or Kayode just didn’t show us ni… I love Laycon’s confidence and strength

    @mosefavor1: Laycon is SC? Can’t believe this…… Can’t even hold my tears…. Laycon as I always say, you’re a star and child of Grace. You shall achieve all your goals not even any form of afflictions can stop you dear.

    @Felix_Onyemaech: It’s sad to know Laycon is SC but guys pls stop dragging Erica into this sad revelation. There was no way she knew his blood group before she got disqualified. And the words she said to him is what anyone can say when angry. Pls keep Erica out of every negative vibe here pls

    @tee_atu: I hear say Laycon d form sickle cell patient now to get sympathy vote over Dorothy… See scam?????

    @Uchaay_Chi: All of you saying Laycon was looking for pity votes, do you now all see that the guy is been genuine. IF he had wanted the pity votes he would have put in our faces since day 1 that he has SC.

    @itsUchman: Funny how you guys keep saying “now Laycon is definitely the winner”. Omo even if he wasn’t disqualified and they didn’t have a fight or we didn’t know his BG, baba had this show on lock from the 1st or 2nd week. Margins might have been different but he was a sure winner.

    @DrOlufunmilayo: Laycon said yesterday he is SC genotype. This is why he’s skinny. Seems only Erica knew. Yet she bodyshamed him. She mocked him for not taking his drugs in a week and that he will die before age 50. I’m in tears about this. That girl is the worst thing to ever come on that show.

    @drteepie: If you use other people’s problems you have been told in confidence as a fighting weapon during an argument, you are worst than the devil. What Erica said to Laycon re his SC status is the lowest I have seen of anyone.

    @ukonu_obinna: People are just insensitive, which one is Laycon is SC “No wonder he looks that way”. I feel that’s just rude to say,. Like this doesn’t sit well with me. Can’t you just empathize, and leave out how he looks? Gosh!

     

     

  • BBNaija: I have Sickle Cell- Laycon makes shocking revelation

    BBNaija: I have Sickle Cell- Laycon makes shocking revelation

     

    Big Brother Naija housemate, Laycon has revealed that he has a milder symptom of the sickle cell anaemia disease.

    Laycon recently revealed his blood group to be sickle cell during a conversation with Dorathy and Vee.

    Laycon said he has haemoglobin that carries symptoms similar to those of Sickle Cell disease, but milder.

    “My blood group is Sickle Cell, I don’t like to tell people my genotype because I feel they will think I’m sick.”

    In her reaction, Dorathy said Laycon’s genotype could be the reason he’s not fat.

    “Guess that is why you are thin,” Dorathy said.

  • Sickle cell carriers should not be discouraged from marrying each other – Expert

    Sickle cell carriers should not be discouraged from marrying each other – Expert

    Dr Annette Akinsete, the Chief Executive Officer of the Sickle Cell Foundation has said carriers of sickle cell anaemia should not be stopped from marrying each other.

     

    Akinsete, on the sidelines of the inauguration of the Muyiwa Talabi Exchange Blood Transfusion unit in Lagos, condemned the bill before the Senate prohibiting the marriage of sickle cell carriers.

     

    “What we are saying is that children under the age of five should receive free health care, pregnant women who have sickle cell disorder should also be treated free. I expect to see those components in the legislation, not to say those who are carriers should not marry each other. Discouraging carriers of sickle cell from marrying each other is like trampling on their rights

     

    “There are options available to those who are at risk of having children with sickle cell and you have to make those options known to them. Some people want to marry and adopt children, it is not for you to prescribe that Mr A and Miss B must not marry, it is against human rights. We have what is called prenatal diagnosis where couples who are at risk of having children with sickle cell can determine the genotype of their unborn child in early pregnancy,” Akinsete said.

     

    She, however, said the foundation frowned at pregnant women who do abortion after discovering they were going to give birth to babies with sickle cell disorder.

     

    Akinsete said the stem cell therapy and the exchange blood transfusion have been proven to improve the condition of people living with sickle cell disease.

     

    The Chairman of the Foundation, Prof. Olu Akinyanju, said the Exchange Blood Transfusion unit would help to improve oxygen delivery and clinical condition more efficiently than simple transfusion by simultaneously replacing abnormal patient red blood cells.

     

    The representative of the donor family, Mrs Busola Talabi, said the Exchange Blood Transfusion unit was donated to the foundation in the memory of Mr Olumuyiwa Talabi and to also help in relieving the pains of people living with sickle cell disease.