Tag: sickle cell

Sickle cell disease (SCD) patients are lamenting. The reason is lack of support from the public and the government. They feel abandoned and want people to identify with them in their moment of grief. Two patients bare their minds to WALE ADEPOJU.

uicidal thoughts have occurred to Wilson Michael at least once.  For those who do not know him, it will be too early to judge him. He is a 200 biochemistry student at the College of Medicine, University of Lagos, and if everything goes well he will complete his studies. But why did he think of commiting suicide?

It is because, Willy, as he is fondly called, has lived with sickle cell disorder for the past 27 years and as such has experienced a number of ‘painful’ crisis.

Another sickle cell disorder sufferer, Mr Kelvin Akpavie, on the other hand, has been battling leg ulcer; no thanks to sickle cell.

Besides, his family back home in Isoko, Delta State, has been impoverished by his condition.

Akpavie could not even complete his education. He was forced to drop out of school and abandon his studies at Senior Secondary (SS) 3 .

The big question is, are SCD patients getting the support to live with the disease in Nigeria? No, said the two sufferers.

For Michael, most tales, more often than not, have ended in woes than joy. This, he said, is a cause for concern as he urged the Federal Government to do something about the problem.

According to the Sickle Cell Foundation Nigeria (SCFN), almost 300,000 children, mostly in sub-Saharan Africa, are born with  sickle-cell disease yearly.

According to its chairman, Prof Olu Akinyanju, many Nigerians with the AS blood type are carriers of the sickle cell genes.

The SCFN chair described SCD, or sickle-cell anaemia (SCA) or sometimes drepanocytosis, as hereditary blood disorder, characterised by an abnormality in the oxygen-carrying haemoglobin molecule in red blood cells.

The condition, Akinyanju said, can be very serious when there is no support.

“It is worse than HIV/AIDS because most SCD patients hardly smile. This probably was because the society has left them to their fate,” he said.

The complications of SCD, he said, can be prevented to a large extent with vaccination, preventative antibiotics, blood transfusion, and the drug hydroxyurea/hydroxycarbamide.

A small proportion of patients require transplant of bone marrow cells, Akinyanju said.

Recounting his ordeal, Michael said life has been very tough for him, especially during crisis.

“When I’m having crisis, it is like hell. I always wish for death. Sometimes, I crave to end it all once and for all,” he said.

People, he said, do not know what it is like for somebody to be experiencing pain in their bones. “The pain in my bones can be so severe that I often feel like dying.”

Describing the crisis, he said: “It is like somebody axing you. The pain and tears are uncontrollable. And my bones will become so feeble to the extent that I am completely helpless.”

He said sufferers should be supported financially and morally, adding that life would be hell for them without these. SCD has affected his education, growth and life in general.

“For me, everything was upside down. My family could only do very little to help my condition because I did not come from a well-to-do family and most times getting money for treatment is a problem. This was why life was so difficult for me,” he said.

Michael said to relocate to Lagos from Warri was difficult, but a decision had to taken to save his future.

“I have been providing for my treatment and education. This is difficult because I am presently studying to become a biochemist. So, this makes me to work and study at the same time,” he said.

He said his parents did try, but were frustrated owing to poor cash flow. “One day, they told me that they were tired of everything. I was so sad but I understand their predicament,” he said.

The reason, he said, was simple: “My elder sister was also a sickle cell patient. They had to cater for her too,” he said.

He said most times, his parents would struggle to pay for his sister’s treatment until she passed away.

People, he said, discouraged his parents from spending money on his treatment since they were already broke. “They would tell them that I will not survive it. This made them resign to fate that I would die anytime soon. But, something kept saying I would make it,” he said.

He said it was during this period that he left Warri to fend himself in Lagos, stressing: “Since then, I’ve been on my own without social support. However, I always encourage myself that I am going to live. But I am still trying to put myself together as I am a bit disappointed,” he said.

Michael said he owed his continued existence to some doctors and friends, who always lend a hand during critical moments.

“If not for their regular support I could have died. I met them when I gained admission to study at CMUL. They made me who I am today,” he said.

He said he could not do what most of his friends do because he was too weak to engage in physical activities, even though he loved to be lively. “If I push harder like my friends it might result to a crisis. So, I always keep to myself,” he added.

On his lifestyle, he said: “I have never lived a normal life. When people are having fun, I am battling with crisis and pains.”

He said SCD has affected his relationship with friends and general well-being, adding: “During the Christmas or Easter, I am always miserable because I cannot go to the beach to swim or cinema to see a movie. It is either I am having some pain or taking precautions against the crisis. I always miss out in everything; some clothes that I should have worn I could not for fear of getting cold. All aspects of my life is affected.”

He said he could not eat the kind of food that he loved, especially the traditional oilly soup in Warri, because of SCD.

He said any attempt to eat it may spell doom for him as it can cause skin reaction.

“Also, I could not use some drugs prescribed by doctors, especially Tramador capsule. I always take the tablet form. Its capsule causes irritation on my skin.

He advised sickle cell patients to be themselves and ensure that they take their medication as prescribed by their doctors. They should avoid anything that can trigger crisis, especially stress, he added.

“Sickle cell patients should take food that is rich in protein, such as beans. They should also relax. The reason I experience crisis because of my heavy schedule as a worker and student,” he said.

He said he usually starts his day at 6am and ends it by 9pm, Monday through Friday, adding that it is a must do for him to become somebody in life.

Mr Akpavie said he has never felt bad for being an SCD patient.

According to him, the reasons were best known to God.

The Isoko, Delta State indegene, said his parents did their best for him before they passed away. Akpavie, who lives with his elder sister, said out of eight children, he was the only one with the condition.

He called for support from well-meaning people and the government, stressing that the financial help he was getting could not meet his medical needs.

He said: “I have leg ulcer, which I must treat regularly. There are injections that I must take. These have not been easy.”

He said his sister has been a pillar of support, adding that anytime she does not have money his treatment cannot go on.

He said he could not go back to school since the demise of his father.

“I was in Senior Secondary (SS) 3 when my father died. After his burial, there was no money for me to return to school. This is coupled with the accident which I had. These worsened the leg ulcer,” he said.

Patients, he said, should take their treatment seriously, adding that they should avoid worries and be focused.

“I know that one day it would be better than this. None of his extended family has shown any interest in assisting him. I am on my own,” he said.

Akpavie is still nursing the ambition to return to school if he could get help.

Sickle cell disease (SCD) affects nearly 100 million people worldwide and is also responsible for over 50 per cent of deaths in those with its most severe form, a Consultant Haematologist/ Executive Secretary, Lagos State Blood Transfusion Committee (LSBTC), Dr Modupe Olaiya, has said.

She said in Nigeria, SCD is among the top 10 non-communicable diseases (NCDs) causing significant disability, morbidity and mortality.

Dr Olaiya spoke in Lagos during a sensitisation programme for SCD patients organised by a non-governmental organisation that caters for sickle cell disorder patients, Genotype Foundation.

She said Nigeria has an annual infant death of 100,000 representing eight per cent of infant mortality in the continent, adding that two per cent of the population has SCD while 25 per cent has the trait.

She said voluntary blood donation is relevant in relation to sickle cell disorder because sickle cell disorder patients require blood urgently in most cases when they are in need of it and it is crucial that blood must be available to give them.

She said LSBTC is working to make sure that blood is readily available by putting up advocacy to motivate the public to donate blood voluntarily because, in emergency, it is only blood that is in the blood bank that can be useful;” the one that you are just collecting, you cannot give it to a patient in an emergency, because it has to go through screening. Blood that will be useful in an emergency must have already been available in a blood bank and this is why the issue of campaigning for blood donation is very important.

“Lagos state has a centralized blood transfusion service and it is a law that every unit of blood collected in the state must be screened by LSBTC.

“Death from shortage of blood is preventable and this is why we want to avoid it by campaigning regularly for voluntary blood donation,” she said.

Executive Director, Genotype Foundation, Doris Gbemiloye, said the programme was borne out of the need to sensitise the masses on the need to get blood at the right place which will make a healthy for transfusion.

She said when unsafe blood is transfused, there will be reaction and this can lead to sudden death. She noted that voluntary donation has really saved lives adding, the risk of HIV/AIDS will also be reduced.

When I can these days, I keep away from local news broadcast on radio and television. For the news train hardly brings the good cheer. Most of the time, the news is about the celebration of economic waste or of dirty men gaining the upper hand in the struggle for power to either make Nigeria a dirtier country or a more beautiful one. So, sometimes, I miss some important personal news which, these days, are like needles in the hay sacks of distressing  public news. But thanks to friends such as Eno Asam,  and Hycith Uzor, I am kept in touch with goings-on. Before I address the subject I am heading towards, which is the death, overseas, through Sickle cell anaemia complications, cause of the death of a child of a prominent national politician from Ogun State, I have in mind the  commissioning  of  a multi-billion naira stadium in Akwa Ibom state. This is good news for people from that state. They are keeping up with the Joneses nationwide. But the Press reports would appear, as usual, to be one-sided eulogy. We are not told if the cost compares favorably with those of kindred stadia world-wide, and if it would not end up as an Events Centre, which is the fate of many stadia nationwide. In Europe, as elsewhere where governments and citizens mind cost and public spending, stadia are built specifically for specific economic projects, such as an Olympics meeting or football World Cup, which recoup the lost one-time or one-off. This way, gigantic stadia do not become dependent on the next payer for their upkeep. Rather, they pay their ways and put something tidy back into the public till from whence they derived their existence. We pray the Akwa Ibom International Stadium become one of such stadia.

Ordinarily, the commissioning of this stadium needs to be no more than a state government event to which the governor was free to invite the President. But these are not ordinary times. A general election is around the corner and the state government would like to make political campaign out of it. And that’s why, in my view, it ended up being a People’s Democratic Party (PDP) event, with the national chairman of the party in attendance. This is understandable and excusable. What I consider odd and worrisome is the presence of Service Chiefs. These gentlemen are professional soldiers and not politicians, and should be insulated from politics. They are not Service Chiefs of the PDP but of the Nigerian Armed Forces. The armed forces are struggling to re-professionalise, and this effort should not be denied them. In a hard-worm democracy, the armed forces should be seen to be truly in their barracks. Their pretence at public civil for is a dangerous signal of the over-reliance on force, not persuasion and positive government impact, to govern. The sad list of governance by force is mounting. Nothing has been heard of or been done to the trauma of a judge in Ekiti State, where a High Court judge who fled his chambers  through a window after he was, beaten and derobed by supporters of a PDP governor – elect, whose poll victory was challenged in court by his opponents. Under one month ago, the Speaker of the House of Representatives, a PDP member, decamped to the All People’s Congress (APC) and, promptly, the Federal Government supported him of security cover attached to his office. This is shocking, to say the least, and important signal of the dictatorship. Did the President forget, I asked myself, that he swore with the Bible at his inauguration to defend the constitution of Nigeria with all the might of his high office? Did he not remember as well that the Constitution he swore to defend created the office of the Speaker? Has he not heard of the theory of the Separation of Powers, in which the Judiciary, Legislature and Executive are co-ordinate arms of government, none of which should bully the other(s)?  Haven’t governors recently decamped from other parties to the PDP? Were they punished for doing so? In this regard, First Republic politicians were more politically educated and civilised than the present corps. In that Republic, Chief Obafemi Awolowo was constitutionally recognised as the leader of opposition, and he earned a salary from the Federal Government to opposed the government so that, in doing so, the government can be kept on it toes, awake all the time, to the benefit of Nigerian people. Opposition to Balewa’s Federal Government was robust. But, soon, the government became intolerant of the opposition and tried to crack it. That effort was to lead to the military take-over of government and to the civil war, from which Nigeria is still struggling to recover. That is why I recoil and tune off from news.

 

Sickle Cell life

or a family beset with a sickle cell child or children, there can hardly be a time as traumatic as a crisis time or when, finally, death comes. I know of a couple who lost their four children to this blood disease. I have an uncle who has lost three of five children. I have a high school mate who has three children, all sickle celled. His wife wanted them to have another child in the hope that one would be sickle- cell free. But he would not hear of it, let alone give it a try. That, of course, means tension in the family when a husband adamantly refuses to let a wife have her way. Add this to hospital bills and the anxiety from stories flying all around that sickle cell children hardly survive into their thirties. For the family, this could be traumatic. Money is pumped into a child to keep him or her alive, when, behind the mind of the spending parent, there is lurking fear that death may come at anytime. This thought is dangerous for the child. For it may grow into powerful thought forms which attached to him or her and lower an ethereal bridge to the content of the fear of the parent…death of the child.

We live in a world in which all questions are not resolvable in many earth-lives. Thus, medically, the cause of the sickling of the red blood cell is still largely unknown. Even medical probability that the parent of the ASgenotype are likely to produce at least one SS genotype child in four children has been defeated by some couples. When I was a pig farmer at Oke Aro, near Iju, Ogun State, one of the more than 3,000 pig farmers was an AS woman who bore her husband, also an AS, genotype, five children, none of them as SS. They must be a rare and lucky couple. And the stories of such couples encourage many people to believe these would be a transcendental answer to the sickle cell question. By transcendental, is meant beyond the earthly. A more current word for that would be spiritual.

In exploring the spiritual dimension of this question, we cannot gloss over the loss of Nature which selects souls which form a family. We ask: What is the nature of the souls who form SS type blood. Spiritually, we know the spirit forms the body it incarnates into inside the womb. Prior to this incarnation which occurs mid-way through pregnancy, the astral prototype of the soul hangs around a woman in whose body a sperm cell has fertilised one of her eggs. It is after the likeness or image of this astral prototype of the soul that the growing body forms. Through the Grace of God, we are permitted through revealed knowledge to now recognise that couples actually attract the souls who come to them as children. These souls are of the same nature as the natureof the mother or the father, or of whoever is physically or psychically closest to them, or to the woman in particular. To women, it is more given to will in this regard. But, unfortunately, during the crucial first half of pregnancy women do anything but will. In this very crucial segment of the pregnancy, they  gratify base instructs. And that suggests that only souls at this base level of life can approach them for incarnation. When we appreciate this, we may come to a better appreciation of the annunciation.For Christians, the annunciations is the Revelation to Mary, the would-be mother of the Lord Jesus by the Angels that she would conceive and bear a child to be so named, for a Divine Mission on earth. The Angel’s Message, therefore was to focus her mind on the coming One, lest she de-focus and the attraction of this Being is missed or become difficult. It seems to me that AS genotype people like me are cousins of SS genotype, people are safely related to them somehow. Since the spirit is known to exercise considerable influence in the making of the blood, through which it controls the body, some people believe it must itself be of such nature which expresses itself in the sickled red blood cell. But since no reversal to normality has been reported in the condition of this cell, it has been possible to argue otherwise. By this, it is assumed that since the human spirit evolves or devolves, and accordingly isn’t static, so, the nature of the blood shouldn’t be, if it is an expression or testimonial of spiritual nature. When it comes to all these, I always remind myself that we humans know little or nothing about creation and should be content with the promise that, when the time is ripe, we would be guided into more mysteries of the blood through people who would be given this special assignment and sent to this earth for that purpose.

While we await the breaking of this dawn we should be content with the bridges that are being built to link the present void with that future. These bridges are those efforts being made to heal sickle cell problem from outside of their root cause, of the nature of the human spirit.

Thus, the following suggestions, which may support the physician or health service provider’s efforts, are derived from the review of healing arts in many cultures and have been clinically proven to help the patient’s health and well-being.

 

Nature of the sickle cell

ormal red blood cell, like a coin, is flat in nature. It is filled with hemoglobin which helps it to absorb oxygen from inhaled air circulating in the blood, and from oxygen absorbed from the atmosphere by green plants. The plants store the oxygen and release it for use in the body after the digestive system would have broken them down into their component parts. A sickle cell, on the other hand, is a folded cell. One picture of them which comes to my mind is a comparison of a green leaf on the stack, fully spread out and living, and a fallen leaf which has lost some vibrance and has begun to curl up or rumple. In this condition, the sickle cell is weak. It is like a power house which is meant to generate and supply electricity to households but does not have enough electricity or energy to do the job. In this weakened condition, the sickle cell is too weak to protect itself against the ravages of free radicals, toxins, microforms (bacteria, viruses, yeast etc) which constantly assail it. Accordingly, its lifespan may be reduced by half. Thus, if normal cells live for between three and four months, a sickle cell lives for no more than about six weeks. This has some implications, such as:

•Reduced oxygen supply to the body

•Extra demand on the bone marrow to make more red blood cells

•Extra workload on the liver and spleen to clear the debris of a large population of red blood cells dying prematurely. A decreasing blood volume which may cause the heart to stop working.

In Alternative Medicine, efforts are made to address these and other challenges posed by the sickle cell, as we shall soon read.

 

Oxygen depletion

xygen is an elixir of earth-life for us humans. It is a component of the air we breathe. In high school of the 1960s, we were taught it accounted for 21 percent of air volume. But, recently, scientists investigating air bubbles trapped in Antarctic ice millennia ago have found as much as about 30 percent or more of oxygen in these air bubbles. This suggests that gasses configuration of the air hasn’t always been what we were taught in high school. Now, a correlation is being drawn between oxygen air content then and now and longevity then and now. It has been shown, from example, in hyperbaric oxygen therapy, in which the patient is kept in an oxygen chamber or tank, that invading germs and cancer cells die when the body is suffused with oxygen. And, now, researchers are wondering ifdeoxygenation of the atmosphere and of the human body are not related to shorter lifespan on earth today as infections and degenerative diseases gain ascendancy.

In sickle cell people, oxygen is a scarce commodity. Yet it is crucial for combustion in the cells for the production of energy. An immune system without sufficient energy stocks cannot fight well. Yet the enemy it is to fight enjoys an anaerobic environment, that is an environment which does not have oxygen. If there is no sufficient oxygen to make energy, for growth, repair and defence, the body becomes weak, thin and disease – ravaged. This is why many sickle cell people hop from one crisis after another, weak and lifeless, and many die young. Happily, they need not die young any more, and they need not express those testimonial symptoms of sickle cell which readily give them away as challenged people. In the 1990s, when the research on Jobelyn was at its infancy as a herbal remedy for sickle cell anaemia, I was priviledged to observe sickle cell children play football on a small pitch. Recently, Lagos state University Teaching Hospital (LASUTH), at Ikeja, Lagos ran months-long research on Jobelyn in sickle cell therapy and concluded that it helped to stabilise or improve the wellbeing of its participant patients. None was found to suffer a crisis during the duration of this investigation. Jobelyn must have helped them in a dual capacity as antioxidant and blood builder.

Before the advent of liquid, capsule or spray oxygen formulas in Nigeria, there was heavy reliance onVitamin E in sickle cell anaemia therapy. Vitamin E is an antioxidant. That means it helps to eliminate free radical molecules which torment the cells. Free radicals are unbalanced molecules which are trying to steal electrons from the cells to balance themselves. They may strike a cell as many as 150,000 times in one day, boring holes in them. Through the holes, cell contents leak. The cell struggles to seal these leaks while, simultaneously, carrying out its life processes, without which we would not have enough energy and may die. Only a healthy and energetic cell can triumph over this ordeal. The sickle cell, weak and devitalised, cannot successfully cope. But when Vitamin E surrounds it as an antioxidant, like security-men protecting a Governor or President, the molecules of this vitamin donate themselves to the free radicals, thereby neutralising them and protecting the weak sickle cell. As an oxygen enhancer, it has been proven that mountain climbers who take Vitamin E supplements, are able to survive better and for longer periods than those climbers who did not. This is because, in high altitudes, oxygen content is low and Vitamin E helps the body to utilise the little  oxygen efficiently as if a shortage did not occur. It is like the thrifty understanding good wife, who runs her home beautifully on a shoe-string budget to the delight of her husband.

Why Vitamin E, the wheat must be separated from the chaff, d-alpha tocopherol, from dl-apha tocopherol. It should be appreciated, too, that tocopherolsare different from tocotrienols.

A sickle cell therapy for crisis prevention or crisis management which involves Jobelyn and Vitamin E may also include oxygen supplements. There is a liquid form of it from Oxylife in the form of food grade Hydrogen Peroxide. Please note that this is not the mouth wash sold at the drug store but the food grade quality. In the oxygen capsule category, there is Vitalaire. It helped many people out of fainting spells. Such people may not have enough oxygen in their brains. In serious emergencies where capsule oxygen or the liquid may take an uncomfortably longer time to work, the oxygen spray is the master Hercules or the king of the road. To this regimen may be added Grape seed extract, and antibiotic and anti-viral substance which, as an antioxidant, is reported to be about 50 times stronger than Vitamin C and Vitamin E.