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Sickle Cell Anemia Pain Has Made My Life A Living Hell – Japheth Ezekiel Marchibi

Japheth Ezekiel Marchibi

Sickle Cell Anaemia Pain Has Made My Life A Living Hell – Japheth Ezekiel Marchibi

Exclusive report by Linua Oota, The Nation

Japheth’s parents are retired school teachers. They have spent every penny that comes their way trying to rescue him from the stranglehold of sickle cell anaemia but there seems not to be any sign of light at the end of the tunnel.

Rather, the condition of 29-year-old Japheth Ezekiel Marchibi appears to worsen with each passing day, prompting the embattled indigene of Akwanga Local Government Area, Nasarawa State to plead with God to take his life.

Twice he has had his university education scuttled by sickle cell impelled crisis even at the verge of completing his degree programme at the Federal University of Science and Technology (FUT), Minna, Niger State, where he was studying Fishery and Aquatic Management and at the Nasarawa State University, Keffi, where he was studying Statistics.

He said: “I would have been a graduate a long time ago but sickle cell has deprived me of that dream.

“In 2007, I was offered admission at the Federal University of Science and Technology (FUT), Minna, to study Fishery and Aquatic Management. When I was about commencing registration, the sickle cell crisis struck me down and I missed the admission.

“I remained at home battling sickle cell until 2008 when I got another admission to study Statistics at the Nasarawa State University, Keffi. I started well from year one to three, but the ailment struck me down again.

“I missed a lot of classes and continuous assessment tests. Statistics is a course that one really needs to give attention.

“It got to a point that I could not carry on with the course, so we made a decision to do a change of course to a department where I could cope, because Statistics is pure Mathematics and missing classes was not the best.

“I changed my course to Psychology and from 300 Level, I was taken back to 200 Level. I started again and was doing well but the sickle cell crisis was still assailing me.

“Before then, I was battling with a condition known as sickle cell ankle ulcer. It is a kind of wound that appears on the leg. “It will start like a mosquito bite, but if you don’t manage it well, the wound will grow out of proportion.

“I was battling with it while attending lectures and managed to get to 400 level.

“When I got my project topic, I came home to get some materials to go back to school to kick-start my project, but I have not been able to go back to school till date.”

Japheth, who said he was undergoing excruciating pains in his left leg because of the killer disease, told our correspondent amid sobs that God should not have allowed him to come to the world if only to save him from the pains and agony occasioned by sickle cell anaemia.

He compared the pains to being hit by a tornado, adding: “The pain is difficult to describe. It is right in your bones and you can’t move, eat or talk. You feel it in your back, your joints and in your kidneys.”

Japheth recalled that the ailment has denied him many life opportunities, noting that his journey in life so far has been that of pains as he has been going in and out hospitals. He said: “I was born on February 28, 1989 as a sickle cell child. So far, the journey has been an episode of pains in and out of hospital.

“My primary and secondary school days were very challenging, but I managed to complete my secondary education.

“I became very unhappy and depressed when my parents revealed my condition to me. I wondered why I should be saddled with such a condition. The financial cost and emotional pains that have gone into this are unimaginable.

“It begins like fever and gradually leads to a condition known as AVN in sickle cell. It is a condition that mostly affects the hips or the joints.

“So in October 2014, I was diagnosed of AVN. My left hip was damaged due to lack of oxygen supply to the bone.

“Sickle cell is a blood disorder. We were told I needed a hip replacement surgery with an artificial one because my left hip was totally damaged.

“We consulted many hospitals in the country and most of them said they could not perform such surgery with sickle cell ankle ulcer on my leg.

‘How ailment crippled my knee, scuttled my university education twice’

“Most hospitals said the ankle ulcer needed to be treated before the hip replacement surgery. Throughout 2015, we tried to cure the ankle ulcer to no avail. I was on wheel chair throughout the year.

“The pains were undefined, placing my leg in one direction to comfort myself led to total damage of my left knee, which is called ankilosis. So, stretching my knee again became a problem.

“At this point, I was battling with three issues: ankilosis, AVN and ankle ulcer, all on one leg, and the pains were much

“Throughout 2015, my parents emptied all they had saved in the civil service to get me back on my feet, but it was really proving stubborn. My condition deteriorated daily with excruciating pains.

“There was a time I saw my mates in the university on Facebook celebrating their graduation. I cried endlessly on my sick bed. I was traumatised because graduating from the university has always been my dream.

“Then in 2016, we ran into one medical doctor, Dr Ahmed. He has an orthopedic private hospital in Wuse II. He promised to carry out the hip replacement surgery without treating the ankle ulcer.

“In July of the same year, he carried out a successful hip replacement surgery on me. The fee for the surgery was N2 million but we ended up spending N2.8 million, excluding feeding and other expenses.

“My father got himself indebted to raise the money. But after one week of the surgery, I observed that my left leg was dangling any time I wanted to move, even though I had kept to the doctor’s instructions.

“We went for the x-ray and it was discovered that the replaced hip was dislodged.

“The pains were too much. We went for a revision surgery and the surgery site was opened. The pains at this point cannot be described.

“He did the revision surgery and it was pushed back into position. I was on cast iron for a month. They had to separate my legs with an iron rod. That was another painful experience I will never forget.

“The pains were so much that I could not go to the toilet. I was literally incapacitated, but I was later discharged.

“At home, I was on wheel chair tolerating the pains and trying to see if I could by chance go back to school, because there was no money to carry out the knee surgery again. My knee was already damaged and we needed its replacement via surgery. “While I was battling with how to look into the knee surgery, the hip replacement surgery dislodged the second time. This time, it was totally out of position.

“The day I was told the hip replacement surgery I did had dislodged again and totally gone out of position, I felt like just dying to bring an end to all the suffering and pain. It was really traumatising.

“I was asking God why He would allow me to suffer like this. Is He really hearing my prayers? He knows the reason why He allowed me to come to the world bearing sickle cell. It appears God was not fair to me by allowing me to come into the world.

“I made a decision not to go back to the theater again because doing so would increase my pains. So since 2016 till date, I have been living with a dislodged hip, ankle ulcer and knee pains all on one leg.

“Recently, we went back to the hospital and the doctor said the surgery site was infected because the wound refused to heal and that another hip replacement surgery needed to be conducted.

“But there is no money as my poor parents have exhausted all the money they have made in their life time.

“I am now in a hopeless situation with pains.”

His father, Mr Ezekiel Marchibi, 70, said he got married on December 21, 1973 when the world was not exposed to the modern technology of ascertaining partners’ genotypes before going into marriage.

He said that from 1989 when Japheth was born till date, he has not known peace as he has been constantly in and out of hospital and his entire life savings have gone into his treatment.

“I have exhausted myself, incurring huge debts to save his life without any improvement,” he said.

Although he says he believes in miracles, Marchibi, who himself was not feeling well due to old age, said he had come to terms with the reality that death might come knocking at any time.

He said: “I can see through the pains my son is nursing. If anything, the 47 years of my happy marriage have been crippled by the fear of when death will come knocking on the door.

“If I have another chance, I definitely will opt out of this mess. I will carefully verify all the little details about my partner before going ahead with marriage.

“But it is late now. We have made our choice and we have to stick by it. We are putting all our hopes in the Lord for a miracle.”

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  1. Natasha Williams

    May 16, 2020 at 7:34 AM

    Your story touched my heart, I wish your parents knew what you will go through, they wouldn’t have married. It is not your fault Japheth, hang in there and watch your diet

  2. Olachi Offor

    May 16, 2020 at 9:58 AM

    Please pray pray and pray, get people of God to join you in prayers. You have gone through a lot, seek for medication that can take care of the infection and ulcer before going for more surgeries. Keep away from excessive heat or cold, eat well and drink plenty of water. God will see you through.

  3. Oluwatobi

    May 16, 2020 at 8:04 PM

    Such an heartrending story!
    I could only pray that the Lord would work wonders in your life. May your recieve a miraculous healing by his grace. If need be for a surgery, may God raise men and help for you and may your latter comfort surpass and completely submerge the pain of the past in Jesus name.
    Psalm 27:13-14
    vs 13 I had fainted, unless I had believed to see the goodness of the Lord in the land of the living
    vs 14 Wait on the Lord: be of good courage, and he shall strengthen thine heart: wait, I say, on the Lord.

    • Fabulous

      May 18, 2020 at 3:22 PM

      Very interesting story

  4. Clems

    May 17, 2020 at 1:52 AM

    What a touching thought and prayer goes wit u japhet.

  5. Ace

    May 17, 2020 at 8:11 AM

    So so sorry to read about your pains my dear brother! I don’t even know how to start!
    I have a child with sickle cell anemia, she’s been in US since five years old, she’s fourteen years and doing great. She started “hydroxyurea” since Nov 2016, and since then God has been working wonders. Although, she has been admitted for pain crisis about three times, the highest days spent in hospital has been three days, so far no blood transfusion.
    The first time, she missed her medication for over a week. Second time, because of her carrying heavy backpack of books to school, it was usually shoulder and waist pains, then I got her a roller bag and I always do the school runs, no more school bus. Third time she was in “physical education” class, once I switched her class, she’s okay.
    She drinks alot of water and other fluids. I take her to “Children’s Healthcare of Atlanta” every three months for routine blood work. To God be the glory, most times her blood work comes back normal. She does “TCD” to check blood flow to the brain once a year, or at times six months, probably if the doctor thinks the former result is not clear enough. She gets eyes check appt once a year, to check for “retinoplasthy”. Dental appt every six months.
    I have access to online nurses if there’s any kind of consultation, so far I never used it. The hospital has been so supportive and thorough. I give thanks to God.
    Her school knows her health issues, and they ‘ve been very supportive. She uses elevator instead of stairs like every other child. The school nurse is very nice to her too, whenever she’s in pain, she administers “ibuprofen” and let her rest in sick bay before returning to class. So far God has been good to us. She’s always in all “A’s” honor roll, she’s smart and intelligent to the glory of God.

    But before she came here, every week my child was in hospital in Lagos for pain crisis. She was never in school five days a week. I know how much I was sending home for hospital bills. I thank God all that is in the past now, I have a reason to smile and be grateful to God.

    My brother the frequency of your crisis caused your hip and ankle issues. The doctors here always fear crisis because it affects the bones each time there’s sickle cell crisis. Your case had been mismanaged from the beginning, and I know Nigerian weather and healthcare
    system worsens the situation. It’s so sad, and our corrupt govt is not helping our situation.
    I don’t even know how to advice you on your dislocated hip other than to say, no more surgery.
    If you can go through your representative, or Senate on health grounds to seek assistance from the govt, you can travel out of Nigeria.
    I know coming to US is tough now. India is very good too. My elder brother went for a lower back surgery four years ago, he is doing great now.

    For all those going through “sickle cell” disease and those caring for such people, I continue to pray for God’s intervention in our cases.
    My brother, God has a purpose for everyone of us. I am sure he didn’t create you to suffer. I share your pains, just like I wished I could carry my daughter’s pains whenever she’s in crisis. Hang on, God has a purpose for keeping you till today.

    • Jilo

      May 18, 2020 at 2:24 AM

      Thanks for sharing your experience with this guy. You have said it all, messed up system of government in Nigeria and corruption contributed much to this painful experience by this individual. I personally do not know much about this ailment but all that I know is that some anemic patients carry some sickle-cell trait. It depend on severity of each carrier.

      You are very privilege to be in a Country like United States otherwise, you could have spent all your fortune and yet not receiving the best treatment you deserved. We are not channeling our money towards research and innovations. Our government are so useless for inability to provide one hospital in Nigeria that can focus research on sickle cell. That is besides my point but I really felt a pain of this young man.

      Another thing that I discovered about these group is how strong they are. They are always stronger than most of their peers. In case of this guy, I think he receive the trait from his mom. A man normally shares this with his daughter while mom gives it to her son. Sickle cell people need to stay around where there is proper ventilation. They need more oxygen to support their red blood cell. The layman description of this is that their red blood cell is different from other normal people that is what is causing them crisis. They always need to receive blood transfusion whenever they are in crisis. This condition can drain the purse of parents of this patient.

      My wife is anemic, AB blood and my own blood group is O- . One of my sons shared her trait but right from his birth we were told he had GCP6 this is another nomenclature from anemic patients but not risen to become sickle cell. That is the reason why I knew little about this. He has never been sick but they told us he could not eat a lots of variety of foods.

      My advise to this group is to be on top of it. Make sure you have your medication around you at all time. They should never be far from hospital in case of crisis. May God in his infinite power continue to support this guy and I hope he receives all assistance he needed during this painful time.

      • Ace

        May 18, 2020 at 8:41 PM

        If both parents have a trait, that is AS genotype, a child may inherit SS from them. Blood group is different from genotype. A human being red blood cell is round and last about 120 days, but for a sickler it only last between 10 – 20 days and sickle like half moon.
        It’s alot to know about SS and I think the best way to know more is look in the internet. Thanks

  6. Jilo

    May 17, 2020 at 10:07 PM

    This is a heart touching story! I pray you get all help needed to minimize the pain you are going through right now. I understand again how you felt for not being able to obtain your University degree.

    If you are privileged to live in western world, you could have had an opportunity to earn your degree because there is no time limit as to when people complete their course. Once you have completed a course, its being recorded in your transcript and it is valid for as long as you are ready to complete other requisites.

    If you miss out one semester you may come back and complete from where you left off. You don’t have to loose all 3 years because you couldn’t make your final year just because of illness.

    I have seen some folks who quit school for work and still came back to complete their program, unfortunately in Nigeria our educational system does not give any room for physically challenged people to complete their course of study. We are just like a one way traffic, we have some proud academicians who never give it a thought to give other people privilege especially people with disability an allowable time to fulfil their dreams. If people can enroll in part-time program to earn their degree, why can’t we allow people with health issue like this guy to be at least happy for certain achievement in their life.

    The years spent shouldn’t matter provided they complete all their required requisite. The NUC board need to re-evaluate this so that critically ill people can at least have an opportunity to achieve their educational goal.

    • Ace

      May 18, 2020 at 12:56 AM

      @Jilo I agree with you, naija education system should accommodate people like Japhet.
      Especially in winter when I feel it’s too cold for my child, I let her stay home. I email her teachers, and they sends her lessons for the day through eclass. They are very understanding and accommodating.
      My brother Japhet, God is in control, there’s a purpose for your life.
      Seek assistance from your representative, it is part of their responsibilities.
      God be with you 🙏

  7. Metu Nyetu

    May 25, 2020 at 9:10 AM

    MERCY! THAT’S ALL I CAN say. Mercy, o Lord, for this son of yours!
    @Jilo and @Ace, your contributions are wonderful!

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