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Tag: sickle cell

  • Groups give hope to sickle cell patients

    Groups give hope to sickle cell patients

    Driven by the desire to raise funds in support of sickle cell awareness campaigns in Rivers State, Sickle Cell Interactive and ManagementAssociation (SCIMA) and the Society of Nigerian Artists (SNA) Rivers Stare chapter have held  a two-day art exhibition.

    Tagged Hope, the exhibition, which was held at Hotel Presidential, Port Harcourt, featured artists, such as Vera Bou Tamous Farah, (a Lebanese), a  painter, sculptor, dancer and interior decorator; Diseye Tantua, chairman, Society of Nigerian Artists Rivers State chapter. A huge percentage of sales of works by the two artists would be donated towards assisting SCIMA.

    Other exhibiting artists included Segun Aiyesan (A Lucid Day), Perrin Oglafa (Beauty in the Mood), Micheal Kpodoh (Morning Devotion), Ike Francis (Hope), Perekeme Kentebe, Charity Iyingima Ide (The Young Ones), Johnson Uwadinma (Be Thy Brother’s Keeper), Woko Joy Aguru (Circle of Unity), Ekeoma peterkingsley (Determination), Timi Kakandar (Sound of Peace),Millicent Okocha (Rhythm of the Town Crier), Uzodibie Amaka (Longing),Emeka Ifediora (A Reason to Laugh), Promise Onali (Passion), Asiegbu Uloma (Bond), Steve  Ogbolu (Ibadan Roof Tops), Kenny Odili (Itwaanya) and Obiora Anamaleze (What Hope).

    Farah’s 25 works, which were untitled reveal her emotions. The works also show that the artist is not scared of handling multiple colours as all is mixed by professionalism. Her touch of realism lifts paintings that are surreal and romantic making viewers feel like being in a dreamland. Farah studied sculpture in Italy and holds a diploma in interior design, a diploma in fashion design and is founder of the Vera Farah School for painting. She also teaches dance and old artisanal art of glass and jars.

    For Tantua, his pop art is distinctive and unique in content and design. His drawings like calligraphy are mostly a selection of traditional proverbs made popular by head broads, bumper write-ups on bus, taxi, tricycles and street signs. His eight works exhibited included Look and Laugh (Crayon on Acrylic), No Time (crayon on Acrylic), Gele Butterflies, No Feeling Blue Wahala (acrylic on canvas), Toy Cars (Oil on canvas),

    But other exhibitors who are mainly members of SNA, Rivers (Chapter) had one work each for the exhibition. “We were able to raise about N15million and we had 50 per cent given to the organisation because the money was to be used for drugs, awareness campaigns and talks that would be held from time to time to aid those in need of drugs and others who had not come to the realisation of care for the ailment,” the organizsers said.

    On his election as SNA Rivers State chapter chairman, Tantua said: “We have a lot of artists in Rivers who spend more time keying into the Lagos market and exhibiting more outside the country. As chairman I am looking at ensuring more exhibitions in the state, building up the hub and encouraging people to collect pieces, invest in art and appreciate their own culture and arts.

    “My appointment was a month ago and it is a challenge to say. The arts appreciation in the state is low, so bringing art to the doorsteps of collectors is our key goal. We are going to be having a lot of seminars and workshops to support the organisation.

     

    “We are going to work with most oil companies in the state, the government and partnering with private individuals to see how we can have once a year exhibitions since it takes a lot of planning to succeed.”

    Continuing, he said: “We will be having exhibitions as a group to showcase what we are doing, not forgetting there are a lot of professors and lectures in the state.

    “We have to encourage them to appreciate and study arts. From time to time we will also have visits on the schools we have over 200 newly-built ones and we will see how to nurture them to accept themselves as artists because it is a gift.  There is no force to art.”

    “Rivers and Bayelsa SNA were together. As of last year, there was a division so we have Rivers and Bayelsa SNA. Since the states are close, we look forward to working together for major events from time to time.

    “Galleries have come and gone. We have had a lot of showrooms which act as galleries as well but for proper galleries, we have not had a main one. Maybe because the awareness has not been pushed on, it is what we call aggressive marketing that brings art to the doorsteps of collectors.”

  • ‘You can live and survive with sickle cell’

    ‘You can live and survive with sickle cell’

    Oluwatoyin Adesola is the Executive Director of Sickle Cell Advocacy and Management Initiative. In this interview with NNEKA NWANERI, Adesola, who has lived with sickle cell, says that hers is a story of bravery and triumph, as she turns 50.

    Would you narrate your experience as a person with sickle cell disease(SCD) to me?

    My over four decades experience living with sickle cell disorder was most challenging, especially in my early years. I was constantly on hospital admission, I had to have numerous blood transfusions and at one point, as a result of infection arising from wrong blood transfusion I dislocated my hip, spent over five months incapacitated on bed and had to eventually start using crutches. Later on I was to have leg ulcers called osteomylitis. These are ulcers that can last anything from one year upward. In all, I have had over a 100 hospital admission, 15 blood transfusions and five surgical operations. It was even a depressing period at a time to the point of almost thinking suicide

    Can you shed light on your childhood days?

    My early childhood was tumultuous. It was a mix of happy and sad times. Though more of being sad. Due to my condition, my education process was disrupted. For a period I couldn’t even finish my secondary school and after over five years of leaving school at form 2, my determined spirit pushed me to study for WAEC and JAMB in the space of two years to be admitted to Lagos State University. Even then, it was not rosy as I had numerous health challenges that caused me to have an extra year before I could finally graduate with a Bsc in Economics.

    How have you been able to live with the condition?

    Apart from trying to maintain my regular medications/living a healthy life style, my strong faith in God has been a focal point in coping with the disorder. When I gave my life to Christ way back in 1996, it was a total transformation for me. During those trying times I held on to God’s promises for me. Having a positive mindset and surrounding yourself with positive and supportive people has helped extremely. I have this Manta” Our challenges are only stepping stones to greater successes. I may have sickle cell but sickle cell does not have me”

    Which food and drugs do you take during crises?

    When I am in painful crises I usually take pain medication in the form of non-steroidal anti-inflammatory drugs (NSAIDs) and for higher levels of pain, the opiate drugs. I would however, not want to name specific names of such drugs on this medium to avoid self medication. However to maintain yourself on a regular basis as a person living with sickle cell one has to take your Folic acid, Paludrine, Non iron multivitamin, Vitamin C and non sickling drugs. I won’t say there are specific foods one takes when you are in crises, but the most important thing during that period is to try and drink plenty to unblock the sickle cell. Hydration is key. Apart from that eating a lot of vegetables like Ewedu and Ugu help increase your hemoglobin (blood level) to reduce the risk of having anaemia. Also maintaining a balanced diet is key and avoiding oily foods

    Is there any family support system?

    Without family support I don’t think I would have been where I am today. Though sometimes they can be overprotective which can be understandable, it is their love and support that has also got me through the trying periods. I have been blessed to have a family and friends who have been supportive and encouraging. It is important to have that because that limits your tendency to turn to self pity.

    Do you suffer any stigmatisation?

    I won’t say specifically I was stigmatised because growing up with my parents (being educated),  I was encouraged to be comfortable I my own skin. Maybe in terms of relationships but it was more of a pity party. The ‘eyaa sorry’ syndrome set in and this does not help as it encourages you to enter a mode of self pity. Someone once said that there are three ways people deal with SCD. The first is to ignore or pretend it does not exist. The second to realise it exists yet feel it’s over rated. The third is to know it exists and do something about it. The third is what I choose to run with.

    Were there any lost relationships/marriage proposals?

    Lost relationships maybe. I think the basic fear/stigma in relationships is the belief that if they marry someone with sickle cell they will die, they will be spending their time in hospital and cannot have children etc. of course this are all myths. I always say anyone can die at anytime, so we our not God to determine peoples fate.  But people tend to run away from getting into relationships with people living with sickle cell let alone one with a physical challenge.

  • Corps members rally against sickle cell

    To educate people and rid Akure South Local Government Area of sickle cell anaemia, Corps members serving in the local government have held a sensitisation campaign on the disorder as part of their Community Development Service (CDS).

    Ifeoluwa Osundare led the corps member to Oja Oba Market, Akure.

    The rally featured donation of free drugs to residents and medical tests, including free HIV screening, diabetes, blood sugar level test and dental check-up.

    Dr Osho Patrick, a consultant and haematologist at the Ondo State Specialist Hospital, dismissed the notion that sickle cell patients die prematurely.

    “Sickle cell can only be transferred through heredity. The haemoglobin in the blood of a sickle cell victim is weak; that is why we always advise them to go for medical check-up frequently. Drugs which contain folic acid should be taken more by patients,” he stated.

    Dr Patrick said Nigeria had one of the highest rates of sickle cell occurrence in the world.

    Mrs Soetan Abimbola, Assistant Chief Nursing Officer, Federal Medical Centre in Owo, said all a sickle cell patient needed to live healthy was support from the people around them.

    “You need to be watchful as parents if you have a child suffering from sickle cell. Dehydration is a factor that aggravates it, so you need to give them water from time to time. They should not be left to excessive exercise, mosquitoes should be prevented around them, they should be kept warm always and more importantly, the environment where they dwell should be kept clean. The more the attention, the less the crises and the more the chances of living a longer life.” She said.

    A beneficiary of the free check up, Azizat Gbadebo, a 400-Level History and International Studies student of the University of Jos (UNIJOS), said: “All the tests we did here today were great. As carriers of the SS genotype, we need to get tested often so as to keep ourselves in good shape at all times. We should know our HIV status, blood sugar level and many others.”

    The convener, Ifeoluwa, expressed happiness at the high turnout of residents.

    “Today is one of my community development programmes in line with the NYSC directive which says that we must help our community. And of course, I chose this initiative because of my passion for sickle cell patients. We just want them to know that they are normal people like us, just that they have a peculiarity they need to address.”

    A 94-year old woman, Mrs Longe Eunice, said she was surprised that all the tests were free, urging government at all levels to support such effort at all times.

  • Lawyer seeks sickle cell policy

    Lawyer seeks sickle cell policy

    Lagos lawyer, Chief Andrew Otokhina, will never forget the years 2009/2010 when he lost two of his  children to sickle cell anaemia within six months.

    His first son Anthony died on the eve of his 29th birthday. His daughter Mary  died barely six months later.

    Anthony had just graduated in Biochemistry from the Ambrose Alli University in Ekpoma, Edo State, and was preparing to study Medicine when he died. Mary died a week to her resumption at the Nigerian Law School in Abuja.

    The lawyer believes his children would not have died had there been a comprehensive policy on sickle cell anaemia in Nigeria.

    “Nigeria has no policy on sickle cell. The United Kingdom and the United States, to mention a few, have,” he said.

    Otokhina said he got married to his wife out of love, but unfortunately, due to lack of a sickle cell policy, there was no information on the need for a genotype test before marriage when they were courting.

    Having seen firsthand the excruciating pain sickle cell patients go through, he would not wish even his enemy the experience.

    “Let no couple out of love marry a person with AS genotype when they also have AS. I don’t wish my enemy the pain. It is non-stop pain for 36 hours during crisis, pain you can do nothing about. It is a very horrendous experience which nobody should pass through,” he said.

    Otokhina believes that a deliberate policy on the medical problem would ensure that information gets everywhere that everyone must get a genotype certificate before getting married

    “With proper information, it can be better managed. This information needs to be disseminated. Presently, the information flow is very limited,” the lawyer said.

    To tackle  sickle cell, Otokhina and his wife set up the Tonymay Foundation to immortalise their children and as a way of helping others. “We have lost our children, but we want to ensure that others don’t lose theirs,” he said.

    Otokhina, who was appointed the head of his village, Ihevbe-Ogbe in Edo State last year, won the Global Leadership award along with eight others by the International School of Fundraising, Wellington College, United Kingdom.

    He led a group which made a presentation on “The scourge of Sickle Cell in Nigeria” while attending the course organised by the Leadership Institute, Virginia, United States.

    “The three key principles of fundraising – getting the attention of donors, presenting your challenge and doing the asking – are what we presented, which earned us the first position and ultimately my award as a Global Leader.

    “I am using this medium to ask good spirited Nigerians to join us in this fight against the scourge of sickle cell disease by either contributing financially to the foundation or joining the advocacy group to press for a health policy on sickle cell, which is predominantly a black man’s disease,” Otokhina said.

    He said Tonymay Foundation, despite its limited resources, organises a monthly clinic where drugs and lectures are given at St. Joseph Catholic Church, Kirikiri Town on the third Thursday of every month.

    Otokhina has been in active legal practice for 29 years, and is one of those championing the abolition of the rank of Senior Advocate of Nigeria (SAN), because, according to him, it is unconstitutional.

  • Custodian partners Sickle Cell Foundation

    Custodian and Allied Insurance Plc is partnering with the Sickle Cell Foundation Nigeria to sponsor this year’s Sickle Cell Anaemia Walkathon to preserve lives.

    Head of Directorate, Administration & Corporate Affairs of Custodian and Allied Insurance Plc, Mrs. Olubunmi Aderemi, said a seven-kilometre walk for the anemia, observed in Lagos Island recently, was organised by The International Finance Corporation (IFC) Nigeria.

    She said the initiative was aimed at raising awareness and increasing public knowledge about the anemia; both in terms of alertness and recent advancements in management of the ailment. It was also aimed at raising funds to support increased research and provide some support to institutions caring for people affected by sickle cell anemia.

    “At Custodian, we like to associate with worthy courses affecting our environment and people around us. We identify this fight against sickle cell anemia as necessary to preserve human lives and are glad we are able to support a worthy course,” she said.

    “I know of a few people with sickle cell anaemia. Victims and their relatives go through a lot of pain, emotional trauma and such at times of crisis. It is costly to manage and requires patience and understanding by employers and lots of care by family and loved ones.

    “We hope to support the creation of necessary awareness of the condition and help educate the citizenry about its management.”

    Aderemi added that the company believes in partnering with initiatives with groups to impact positively on lives in their environment, notinh that with the awareness and fundraiser, research on sickle cell anemia would make progress in Nigeria.

     

  • ‘Fruits vital to sickle cell management’

    A naturopath, Dr Solomon Abutoh, has suggested the regular consumption of fruits such as pineapple, grape and banana, and dark levy vegetables for the management of sickle cell disorder (SCD).

    According to him, the condition has to do with blood and once the haemoglobin level is increased the patient can enjoy stability of health.

    He said a good diet minimises the number of crises being experienced by the sufferer.

    Abutoh described SCD as a genetic disorder because it is inherited by the patient from his or her parents. “When a man whose genotype is AS marries a woman of the same genotype there is the possibility of the couple having an SS. There are three classifications of genotype AA, AS and SS,” he added.

    He said SCD has many symptoms such as malaria-related symptoms especially during wet season.

    “Also there is dehydration which often times is accompanied by weakness and exhausion after straineous activity or exercise,” he said.

    Other symptoms are hardening of the liver known as hepatomegali, stunted growth and jaundice, which can be treated with paw paw (carica papaye).

    Abutoh said the condition is best prevented when intending couples are advised about genotype to determine their compatibility.

    This, he noted is the best line of defense.

    “But once there is a child born with the condition, that child should be encouraged to drink a lot of fluid to counter dehydration”, he added.

    He advised patients to avoid exposing themselves to too much of sunlight. They should wear warm clothes during wet or cold season, he added.

    “Patients should live in clean environment devoid of mosquitoes because a single mosquito bite can affect the immune system,” Abutoh said.

  • ‘I asked God why I had sickle cell’

    Toyin Adesola, an economist and the daughter of the former Vice Chancellor of the University of Lagos, Professor Akin Adesola, has lived with a painful blood condition for 48 years.

    In spite of the many stumbling blocks living with sickle cell has brought her way, Toyin is a bundle of positive energy as she chooses to ignore her flesh and focus on living life to the fullest. This spurred her to give up her fifteen-year-old catering business to set up the Sickle Cell Advocacy and Management Initiative, SAMI. In this interview with Rita Ohai, she shares her pain and journey to fulfillment.

     

     

    WHAT was it like being the child of a Vice Chancellor knowing that they live by very strict standards?

    It was interesting. I must say I learnt a lot from him.

    We used to call him ‘daddy back-up’ because he always tells us to have a back-up plan.

    Although in those days, they did not know so much about sickle-cell but because he was in the medical field, he understood what I was going through.

    Back then he was very protective, especially when it came to doctors treating us anyhow and I always wondered why he would not just allow them to treat me but with hindsight, I have learnt that it is not everything a doctor says is true. You need to think about the consequences.

    All my friends were children of professors, so it was pretty interesting.

    He was also a man of integrity. I remember when I wanted to get into Unilag and my marks were not high enough, the normal thing others would have done is to speak to people there since he was a former VC and I would go in, but he said ‘no’; he insisted that I go to the nearest one that my marks could take which was LASU.

    Some people would scream and wonder how he could do that, but it was his way of living. A very principled person and I love him for that.

    Did you ever feel like you were treated differently from your other siblings?

    Yes! In a way it was because of what I call over-protectiveness. I wasn’t allowed to do a lot of things and my sister would go out and have fun.

    It was pretty difficult to get them to understand that I also had a life to live. But as I grew older and began to assert myself they began to understand that all they had to do was encourage me to be the best I could be.

    You say you lived in the hospital for most of your young life, how did it affect your education?

    Oh it affected me seriously.

    In primary school, I was always coming second or last in class. It was not that I wasn’t intelligent but because trying to catch up with curriculum was difficult, so I could not attend any of the school events.

    When I entered secondary school, I did my form 1 and at the end of that class I had a major issue with my legs and I had to stop school entirely and I did not finish secondary school. It was after many years when friends were already entering or even finishing from university that I decided that my life could not just roll by like that.

    This spurred my to do a crash course in JAMB and WAEC over a period of two years and I entered Lagos State University where I had an extra year due to my health but I was able to finish this time.

    Did being born a sickle cell patient put a damper on your social life?

    Going out has been difficult except you have money to take cabs all over the place. I cannot take the bus because of my physical challenge.

    Sometimes, I may want to do things that I see other people do and I wish I could do it. I loved going to the theatre and attending concerts but that has reduced drastically over the years.

    There are limited things I can do and as I have grown older. If I have to walk around, I would need to use a small cane because of my knees which have reduced my mobility.

    We spend more time staying at home than going anywhere and climbing the stairs is an issue.

    I experienced quite a number of this in my journey with sickle cell. I had some complications with my legs and I had to be on crutches for a while. I spent many years living in the hospital. I say living in the hospital because I was shuttling between the home and hospital, so I can understand what it means to live with sickle cell. Some people describe the crisis pain as worse than labour pain, so it is really extreme.

    As a result if your health you are yet to get married, has this affected you in any way?

    Initially it did. But my take is that marriage is good but if you get into it with someone who cannot handle it and then your partner decides that he did not bargain for it, that can be a problem.

    I have been able to deal with that issue because I am so occupied with other things.

    We live in a society that believes that if a woman is not married, it is the end of the world. In the more developed societies, it is not a big deal as long as they are happy.

    Do you ever hope to find love again?

    Yes. Everybody believes in love. It is a standard. If it comes, it is good but if it doesn’t, I move on and focus on making an impact in other people’s lives.

    In spite of this ailment, are you open to having children?

    In a way, yes. I have even thought about adopting but I have looked at the prospect of having children as a big responsibility.

    I have to be sure that I am able to take care of myself and the child because having children is not the same as having a toy.

    Was there a point that you ever cursed God for having sickle cell?

    I asked the question ‘why me?’ but I will not say I cursed God. I felt that it did not have to be me and I wondered why it could not have been somebody else.

    But I have realised that God will not give you more than you can bear. There is always a good that will come out of every bad situation planted by the devil. If I did not have these experiences, I cannot share with someone who has it. They would say that I do not understand what they are going through. For this reason, I easily communicate with people and they can see me as an inspiration because I am able to overcome it.

    When you see couples who have AS genotypes, would you encourage them to get married?

    Well, I would not force them but I would want them to think about it deeply. They need to go for counselling and if one or any of the couple feels they cannot handle it, it is best to break that relationship because if they enter and in the thick of it, one person decides to get a divorce, the child will have to deal with the problems of a broken home on top of the health problem.

    It is a double-edged sword, which requires you make wise choices.

    What do you like about your life?

    I like the fact that I am a source of inspiration for people. I love the fact that people can see that I have gone through so much yet there is still a zeal and passion in my life.

    I am not negative about what I went through, I am positive about it.