By Babatunde Jose

Nobody knows the trouble I’ve seen; Nobody knows my sorrow; Nobody knows the trouble I’ve seen; Glory, Hallelujah –  Song by Louis Armstrong

Sickle cell disease (SCD) is a group of inherited red blood cell disorders. Red blood cells contain hemoglobin, a protein that carries oxygen. Healthy red blood cells are round, and they move through small blood vessels to carry oxygen to all parts of the body. In someone who has SCD, the hemoglobin is abnormal, which causes the red blood cells to become hard and sticky and look like a C-shaped farm tool called a “sickle.” The sickle cells die early, which causes a constant shortage of red blood cells. Also, when they travel through small blood vessels, they get stuck and clog the blood flow. This can cause pain and other serious complications (health problems) such as infection, acute chest syndrome and stroke.

People with sickle cell disease start to have signs of the disease during the first few months of life, usually around 5 months of age. …And that is when the nightmare starts for parents. Particularly those that have no idea of genotype or blood related disease.

It’s a most harrowing experience, even for knowledgeable parents as they are helpless.  Parents can only empathize but cannot feel the excruciating pain of the patient. In the infant stage of the affliction, parents keep sleepless nights depending on the frequency of the crisis. Crying, wailing, and weeping rent the air all night and they eventually end up in the emergency department of the hospital, where they ultimately become familiar faces.

Yet, that is the beginning of their life challenge as SCD is a disease that worsens over time. No two cases are the same in terms of severity; though, treatments are available that can prevent complications and lengthen the lives of those who have this condition; their life usually hangs on the will of God. Sometimes a simple crisis might not only be life threatening but life taking. My daughter and an unknown lady were both on admission, same evening at Redington hospital for the same Vaso-occlusive crisis. The lady dropped dead in the morning just as they were about to be discharged.

Sickle cell disease is a lifelong illness. A bone marrow transplant is currently the only cure for sickle cell disease. Gene therapy is also being explored as another potential cure.

As a result, treatment for sickle cell anemia is usually aimed at avoiding crises, relieving symptoms, and preventing complications. People with sickle cell disease face many challenges, including severe pain episodes, stroke, and organ damage, including adverse side effects of drugs, like hydroxyurea.

The drug Hydroxyurea, when taken daily reduces the frequency of painful crises and might reduce the need for blood transfusions and hospitalizations.

Hydroxyurea, however, exposes the patient to increased infection as it lowers the number of white blood cells in the blood. It can also lower the number of platelets which are necessary for proper blood clotting. And there is some concern that long-term use of this drug might cause problems later in life for people who take it for many years.

According to Mayo Clinic there are certain precautions you can take, especially when the blood count is low, to reduce the risk of infection or bleeding:

·        Avoid people with infections. Check with your doctor immediately if you think you are getting an infection or if you get a fever or chills, cough or hoarseness, lower back, or side pain, or painful or difficult urination.

·        Check with your doctor immediately if you notice any unusual bleeding or bruising, black, tarry stools, blood in the urine or stools, or pinpoint red spots on your skin.

·        Be careful when using a regular toothbrush, dental floss, or toothpick. Your medical doctor, dentist, or nurse may recommend other ways to clean your teeth and gums. Check with your medical doctor before having any dental work done.

·        Do not touch your eyes or the inside of your nose unless you have just washed your hands and have not touched anything else in the meantime.

·        Be careful not to cut yourself when you are using sharp objects such as a safety razor or fingernail or toenail cutters.

·        Avoid contact-sports or other situations where bruising or injury could occur.

“Using this medicine for a long time may increase your risk of developing leukemia (cancer of the blood) or skin cancer.

“While you are being treated with hydroxyurea, do not have any immunizations (vaccinations) without your doctor’s approval. Live virus vaccinations (eg, nasal flu virus vaccine) should not be given while you are using hydroxyurea.

“This medicine may increase your risk of having lung or breathing problems (e.g., interstitial lung disease). Check with your doctor right away if you develop a fever, cough, or trouble breathing while using this medicine.

“The results of some tests (e.g., continuous glucose monitor) may be affected by this medicine.

“Talk with your doctor before using this medicine if you plan to have children. Some men who use this medicine have become infertile.

“Do not take other medicines unless they have been discussed with your doctor. This includes prescription or nonprescription (over-the-counter [OTC]) medicines and herbal or vitamin supplements.

“Using a special ultrasound machine (transcranial), doctors can learn which children have a higher risk of stroke. This painless test can be used on children as young as 2 years. Regular blood transfusions can decrease stroke risk.

“Childhood vaccinations are important for preventing disease in all children. They’re even more important for children with sickle cell anemia because their infections can be severe.” These are some of the directives of Mayo Clinic on use of Hydroxyuear.

Blood transfusions carry some risk, including infection and excess iron build-up in the body. Because excess iron can damage the heart, liver and other organs, people who undergo regular transfusions might need treatment to reduce iron levels.

The two gene therapy treatments for sickle cell disease recently approved by the FDA in the US, called Casgevy and Lyfgenia, cost $2.2 million and $3.1 million per patient, respectively. Definitely beyond the reach of the average sufferer.

Sickle cell anemia can make life more difficult, particularly for a child, who will need to deal with delayed sexual maturity and stunted growth. You will need to avoid things that can cause a crisis, such as certain medication that restricts blood vessels, high altitudes, and strenuous exercise.

As people with sickle cell anemia grow older, they may develop different and more serious medical problems that happen when organ tissues don’t receive enough oxygen. People with sickle cell anemia are at increased risk for stroke and lung, kidney, spleen, and liver damage.

The leading causes of death in sickle cell diseases are infection, pain episodes, acute chest syndrome and stroke. Death can be sudden and unexpected in sickle cell anemia. Vaso-occlusive crisis is one of the commonest presentations and a leading cause of death.

The pain of a Sickler child is the agony of parents who are helplessly left to witness their child writhing in pain during a crisis, spending endless hours with them in the hospital during frequent bouts of admission and sometimes having the ill-luck of watching them die.

The pain of having a Sickler is well known and cannot be overemphasized. It is this threshold of unbearable bouts of pain that made my daughter to pen the following preamble to the NGO she is currently setting up: THE CRESCENT INITIATIVE for Sickle Cell, to empower those living with Sickle Cell Anemia:

“Two years ago, I sat down on the floor in my bathroom crying and thinking about the quickest method to end my life. I had had a painful episode that went on for several days and I was feeling hopeless.

“My pain score felt like 100/10 and my body felt like I had been hit by a bus. The pain got so bad that I could feel it in my fingers, and I could feel the floor under my feet. Due to the severity of my pain and my low blood level, I had to have a blood exchange.  Managing the pain was too much for me and it ate away my faith, my confidence, and my will to keep on surviving.  I was tired, my life seemed hopeless, and it was unfair that this kept happening to me.

“I cried for several hours recalling all I had gone through…several needle pricks just so that they could find a vein; my foggy memory, a side effect of the medications; and my long absence from work which had started to become “an inconvenience” to my manager and a sign that I might be losing my job.

“It was too much….it was unfair…. I did not want to be here anymore. I cried for several hours and decided to call my therapist whom I had just started seeing.

“Just hearing his voice made me break down again and in between sobs, I explained what I was feeling. He calmed me, listened to what I was going through and tested me for depression which the test confirmed.  Since then, I’ve been taking antidepressants and seeing a therapist regularly.

“During my sessions, I began to notice an improvement in how I felt and discovered that some of the issues I thought were unique to me were actually common for individuals with sickle cell. For example, I became aware that my emotions and stress levels could trigger my pain episodes, which, coupled with anxiety, attacks became more frequent.

“Learning coping strategies and positive affirmations helped me find balance. Through opening up to my therapist and later my hematologist, I realized that many individuals with sickle cell disease could and should benefit from mental health therapy, though it is often not included in their treatment plans.

 “Therapy was transformative for me, and I knew other warriors would also benefit. After thorough research and consultations with healthcare professionals, I decided to establish The Crescent Initiative for Sickle Cell.”

Fortunately, in everything, we always have cause to thank God. (Quran 16:53) and also (Quran 16:78)

We thank Almighty Allah for preserving the life of our daughter Asia Atinuke Jose (AJ) as she clocks 45 next week, May 8 and still counting, In Sha Allah.

Allah has found it pleasant to preserve her despite the Sickle Cell challenges. We also pray for other afflicted souls. May it please Allah to make it easy for them. For all those who have walked this path with us this far, I say a very big thank you.

Barka Juma’at and a happy weekend.

By Babatunde Jose

‘Hope’ is among the most exalted of all feelings. We have bestowed an air of nobility upon it – an optimist hopes, pessimist despairs. In Greek mythology, ‘hope’ is also the last of all things to jump out of Pandora’s box. It is pitched as a remedy for all the evils which leapt out of the box before it. If not a remedy, it certainly gave humans a reason to live on – a hope that things will be better tomorrow, even though it also has the capacity to extend and accentuate one’s misery at the same time.

For the Stoics, ‘hope’ was irrational. It is only by hoping that things turn out a certain way do we create the possibility of things not turning out how we want them to. If where there is misery, there is hope; then where there is hope, there is misery, too. We suffer not because of what we go through, we suffer because of what we hope for. Lucius Annaeus Seneca, who lived through much physical suffering, put it pithily: “we suffer more in imagination than in reality.”

“It is the audacity of hope which makes people dream, but it is understanding the futility of hope which makes people content.” – Maitreya Thakur

Hope is a blend of optimism and willpower. It can exist even in the most difficult situations and emotions. Hope is much more than wishful thinking, as it requires positiveness and determination. Hope is the belief that your future will be better than the present and that you have the ability to make it happen.

Hope is more than a feel-good emotion. It is an action-oriented strength involving agency, the motivation and confidence that goals can be reached, and also that many effective pathways can be devised in order to get to that desired future.

People high in hope tend to focus on what’s in front of them. They don’t dwell on the past or worry about the future, though they do set goals for themselves. They stay focused on what’s happening right now. This allows them to stay positive and act.

Hope is the belief that your future will be better than the present and that you have the ability to make it happen. It involves both optimism and a can-do attitude. This definition of hope is based on “Hope Theory,” a positive psychology concept developed by American psychologist Charles Snyder.

Hope is an optimistic state of mind that is based on an expectation of positive outcomes with respect to events and circumstances in one’s life or the world at large. As a verb, its definitions include: “expect with confidence” and “to cherish a desire with anticipation”.

It is rather unfortunate that hope is not infinite. It gets to a stage when if hope is not realized, it degenerates into frustration and it becomes futile: Meaning it becomes unrealizable. At this stage it dawns on the subject that it is a hopeless hope and a furlong exercise.

What is the danger of losing hope? It can happen when our dreams die. It can also be devastating as they can lead to a loss of purpose and on to depression and discouragement.

When people are sold on the concept of ‘renewed hope’ after years of suffering deprivation, want and insecurity, and are suddenly plunged into poverty, hunger, misery, and want they experience the futility of hope.  Suddenly, the price of fuel jumps from under 200 a liter to 600, diesel becomes out of reach, wages become inadequate to put food on the tables, with prices of food skyrocketing: We return to the state of nature, “No arts; no letters; no society; and which is worst of all, continual fear, and danger of violent death; and the life of man, solitary, poor, nasty, brutish, and short.” So said Thomas Hobbes in his Leviathan.

They project into the future and there is no future for their children and children’s children. This is the futility of hope.

How do we maintain hope in the face of uncertainty? What are you hopeful for? We all want to feel hope, but what does that mean to you? Turn to faith and spirituality. This is where God comes in. For those who poo poo the resort to spirituality, they have not experienced the futility of hope.

Can we survive without hope? Even when you have hit bottom, with no plan for getting out, hope gives. What does it give? Hope gives the motivation and courage needed to succeed. It’s been said that a person can live forty days without food, four days without water, four minutes without air, but only four seconds without hope.

Hope is necessary not just to survive, but also to thrive. Hope that things will change. Hope that the situation will improve. Hope that we can be better.

In 1992 Abiola raised the hope of the masses with his ‘Hope 93’. There was a revolution of rising expectations as the momentum of the campaign increased. Hopes were elevated for a better tomorrow. But with the annulment of that election all hopes were dashed. Then there was an interregnum of terror during which the revolution of expectations became a revolution of rising frustration. But after those dark days came a supposedly ‘glorious’ dawn with the coming of civil rule. Hope was rekindled. So, we thought.

For 24 years hopes have been raised and dashed by our civilian rulers. We had 16 years of the locust, 8 years of clueless rule of the ‘merchants of change’ who brought no change. No light, no industrial revolution, no food, no petrol, no diesel, no fertilizer, at a time, no cash, no future and no light at the end of the tunnel.

And then we arrived at the present with the mantra of ‘renewed hope’: Instead of hope being renewed, we have a worsening living standard. A life of hunger, insecurity, and pauperization. A life of hopelessness and frustration with a dim hope of tomorrow. A life of increased robbery, mass abductions and kidnappings where people are not safe in their homes. This is the hopelessness of hope that we live in: This is the futility of Hope.

In Genesis 8:22 God said: “For as long as Earth lasts, planting and harvest, cold and heat, Summer and winter, day and night will never stop.” That is the consolation from the Bible to keep hope alive.

It encourages us to renew our hope in God. Bolster our faith and make prayer and quiet time with the Lord a priority.  Surround ourselves with people of hope and faith, keep the word of God in our eyes and ears as many hours as possible each day. Refuse to quit and mix faith, hope, and love.

Despair,desperation, despondency, discouragement, hopelessness refers to a state of mind caused by circumstances that seem too much to cope with.

Overall, hope is beneficial to our well-being. Hope encourages us to persist, even though we may be facing setbacks. Hopeful individuals are more likely to frame difficulties as challenges, rather than threats. This enables them to experience setbacks as less stressful and draining.

This brings us to the various types of hope. Realistic hope: is hope for an outcome that is reasonable and possible. Utopian hope: is a collectively oriented hope that combined action can lead to a better future for everyone. Chosen hope: Helps us live with a problematic present in an uncertain future. And, Transcendent hope, or Existential hope, is the hope that is not tied to a specific outcome, but a general hope that something good can happen; this is where we are now.

We keep moving forward with optimism because hope allows us to envisage a better future or a good outcome. Allah promises us that after every difficulty is a relief. Inna ma’al ‘usri yusra. ‘Verily with every hardship comes ease’. Quran (94:6). We must never lose hope that our situation will improve.

Islam rejects excessive hope or excessive fear, describing both as a “pseudo” type, which would respectively contribute to self-deceit and despair, and end in spiritual decline. We should expect things to turn out for the best and we can look forward to tomorrow with confidence. God has promised us that following His guidance will lead us to the best outcome.

“And He provides for him from (sources) he never could imagine. And if anyone puts his trust in Allah, sufficient is (Allah) for him. For Allah will surely accomplish his purpose: verily, for all things has Allah appointed a due proportion. (Surah Talaq, Quran 65:3)

In the Psalms, we read of a Song of Ascents, Psalm 21: I lift up my eyes to the hills– where does my help come from? My help comes from the LORD, the Maker of heaven and earth. He will not let your foot slip– he who watches over you will not slumber; indeed, he who watches over Israel will neither slumber nor sleep. The LORD watches over you– the LORD is your shade at your right hand; the sun will not harm you by day, nor the moon by night. The LORD will keep you from all harm– he will watch over your life; the LORD will watch over your coming and going both now and forevermore. Amen

Barka Juma’at and a happy weekend.

By Babatunde Jose

“So do not lose hope, nor fall into despair, for you will be superior if you are true in faith.” (Surah Al-Imran; 139)

Our world is in big trouble. As world conditions worsen, more of us are suffering the tragic consequences of both natural disasters and man-made problems. Divides are growing deeper.  Inequalities are growing wider.  Challenges are spreading farther. Today’s rarest commodities:  hope and security are receding. We need hope — and more.  We need action.  We also need to ease the global insecurity and food crisis.

We already have reports of farmers in West Africa and beyond cultivating fewer crops because of the price or lack of availability of fertilizers, insecurity due to violent acts of terrorists and the fear of accessing their farms.

We need action across the board.  We are in rough seas.  A season of global discontent is on the horizon.  A cost-of-living crisis is raging.  Trust is crumbling.  Inequalities are exploding. Hunger is everywhere.  Our planet is burning.  People are hurting – with the most vulnerable suffering the most. People are becoming hopeless and helpless. The United Nations Charter and the ideals it represents are in jeopardy.

And yet we are gridlocked in colossal global dysfunction.  The international community is not ready or willing to tackle the big dramatic challenges of our age.  Crises like the war in Ukraine and Gaza, the multiplication of conflicts around the globe.  Crises like the climate emergency and biodiversity loss.  Crises like the dire financial situation of developing countries and the fate of the Sustainable Development Goals.  And crises like the lack of guardrails around promising new technologies to heal disease, connect people and expand opportunity.

Our world is in peril and paralyzed.  Geopolitical divides are undermining the work of the Security Council; undermining international law; undermining trust and people’s faith in democratic institutions; undermining all forms of international cooperation. We cannot go on like this.  Even the various groupings set up outside the multilateral system by some members of the international community have fallen into the trap of geopolitical divides, like in the G-20. At one stage, international relations seemed to be moving toward a G-2 world; now we risk ending up with G-nothing.  No cooperation.  No dialogue.  No collective problem-solving.

But the reality is that we live in a world where the logic of cooperation and dialogue is the only path forward.  No power or group alone can call the shots.  No major global challenge can be solved by a coalition of the willing.  We need a coalition of the world.

In Ukraine, war has unleashed widespread destruction with massive violations of human rights and international humanitarian law. The fighting has claimed thousands of lives.  Millions have been displaced.  We are seeing the threat of dangerous divisions between West and South.  The risks to global peace and security are immense.

In Libya, divisions continue to jeopardize the country.  In Iraq, ongoing tensions threaten stability.  In Israel and Palestine, cycles of violence under the occupation continue as prospects for peace based on a two-State solution grow ever more distant.

In Myanmar, the appalling humanitarian, human rights, and security situation is deteriorating by the day.  In the Sahel, alarming levels of insecurity and terrorist activity amidst rising humanitarian needs continues to grow.  In Syria, violence and hardship still prevail.  The list goes on.

The world is embroiled in multiple crises – from disasters to conflict to climate emergency, threatening the right to health of millions globally, with those facing marginalization or vulnerability suffering the most.

The war in Ukraine has sparked the world’s fastest and largest displacement crisis in decades, according to the United Nations Refugee Agency (UNHCR). Many still in the country are without access to food, water, health care, and other essential supplies. The conflict also continues to have ripple effects across the world affecting the shipment of grains and fertilizer.

In Haiti gang violence and climate change combine for chaos as political instability and violence surge. Armed gangs regularly take control of distribution routes, causing shortages of basic goods and fuel.

In Mali, security and economic crises have left 6.2 million people in need of humanitarian support. The recent withdrawal of the U.N. peacekeeping force has raised safety concerns, especially of renewed fighting between the government and Tuareg armed groups in northern Mali.

Niger’s July 2023 coup has triggered political tensions with neighboring countries and led to the withdrawal of international security assistance. Public spending has decreased by 40%, weakening key services.

The situation in Burkina Faso grows increasingly dire as armed groups intensify their attacks and seize land. Some towns in northern Burkina Faso are almost entirely cut off. The price of food has increased 30 percent, among the highest food inflation rates in the world. Burkina Faso is facing rapidly growing and spreading violence as the Burkinabe military struggles to contain armed groups. Roughly half of the country is now outside government control, with armed groups including Islamic State in the Greater Sahara (ISGS) and Jama’at Nusrat al-Islam wal-Muslimin (JNIM) blockading cities and towns and preventing residents from accessing basic goods and services.

South Sudan is still recovering from a civil war that ended in 2018. While conflict has decreased, localized fighting remains widespread. The country is one of the most fragile in the world. Climate disasters including severe floods and droughts make it increasingly difficult for people to access food and basic resources. Currently, 9 million people in South Sudan need humanitarian assistance. This amounts to 72% of the population. Despite severe flooding, destroyed crops and disease outbreaks, funding shortages forced the World Food Program to suspend part of its food aid.

Syria: Years of war trigger a health crisis. Over a decade of war has destroyed Syria’s health system and left the country on the brink of economic collapse. A decade of conflict in neighboring Lebanon has further increased food prices and poverty. Currently, 75 percent of Syrians are unable to meet their most basic needs and millions rely on humanitarian aid.

The crisis in Yemen is deepening as an eight-year conflict between armed groups and government forces remains unresolved. While a ceasefire reduced fighting for several months, it collapsed and failed to mitigate the economic and health consequences of conflict. As it stands, 80 percent of the population lives in extreme poverty and 2.2 million children are acutely malnourished.

Democratic Republic of the Congo (DRC); following the collapse of a truce between the government and the armed group M23. This exacerbated a protracted crisis that had already exposed millions of Congolese to conflict, political tensions, economic pressures, climate shocks and persistent disease outbreaks. The country entered 2024 with 25.4 million people in need of humanitarian assistance—more than any other country on earth.

The magnitude of the crisis has strained services, created high levels of food insecurity, and fueled the spread of disease.

Afghanistan: An entire population is pushed into poverty. Since the shift in power, Afghans remain in economic collapse while the root cause of the crisis persists. Ongoing efforts to engage the government and improve the economy have fallen short. Almost the entire population is now living in poverty. Afghan women and girls experience the brunt of this hardship. They remain at risk of violence and exploitation. And many are left without a voice as the government places bans on education, dress, travel, and political participation for women.

Across Ethiopia, livelihoods have been decimated by three consecutive years of drought alongside multiple conflicts and now, there is a risk of El Niño-induced flooding. The November 2022 ceasefire between the Government of Ethiopia and the Tigray People’s Liberation Front (TPLF) continues to hold in northern Ethiopia, but other conflicts, particularly in the central Oromia region and in Amhara in the northwest, are fueling humanitarian needs and raising the risk of a return to large-scale fighting. Persistent inflation is further deepening the crisis.

After facing five consecutive failed rainy seasons, Somalia is now experiencing widespread flooding. These repeated climate shocks have devastated agricultural lands, damaged critical infrastructure, and driven humanitarian needs. The country entered 2024 with 4.3 million people facing crisis levels of food insecurity and a limited ability to restore food production. An ongoing government offensive against the armed group al-Shabaab risks driving civilian harm and displacement, further worsening conditions for 6.9 million in need of humanitarian aid.

This is no natural disaster, decades of conflict have eroded Somalia’s ability to respond to shocks of any kind, destroying systems and infrastructure that would have provided a guardrail against the current crisis. For instance, with its food production decimated by climate change and conflict, Somalia’s dependence on imports has proven disastrous—over 90% of its wheat comes from Russia and Ukraine.

We live in a world run by greedy and selfish people, where the majority of humans, even the ones that think they are “good”, take advantage of the disadvantaged and hurt others for gain. People are losing the capacity to think beyond themselves, our priorities are a mess and most of us are crippled by or manipulated by fear. People aren’t raised with a sense of obligation, charity, or any kind of social action or sacrifice. We derive pleasure from hurting each other.

Qualitatively we are in a constantly worsening state. For all our progress, technological ability we have reached a generation where human life had become completely aimless, and purposeless.

Moreover, after all the experiments with different ideologies we have clearly failed with liberal, parliamentary democracy, free market capitalism, and we stagnate in a state of limbo. In actual fact, democracy has failed us; No dividend, whatsoever.

We evolved into a globally integrated, interdependent system and we are desperately helpless in adapting to it as our inherently individualistic, egocentric, subjective nature is incompatible with such a system.

There are those who believe the chaos and turmoil we see in the world is a part of Bible prophecy. See Matthew 24:3–14, Mark 13:3–13, Luke 21:7–19, 2 Timothy 3:1–5,13,2 Peter 3:3,4, l.

Despite the many problems we see today, the Quran gives us a positive hope for the future: Do not lose hope, nor be sad. You will surely be victorious if you are true in Faith. (Quran 3:139)

Let us remember the killing fields of Gaza and the missile rattling between Iran and Israel and the possibilities of a wider conflagration.

Continue to pray for the Palestinians. The extent of the oppression they are facing is reaching new heights and increasing day by day. May Allah Almighty create the means to seize the oppressors and bring relief to the oppressed Palestinians. May Allah Almighty also grant wisdom and understanding to the neighboring countries, so that their voices may unite, and they strive to fulfil the rights of their brethren. Amin

“Your fate has been written with the ink of His love and sealed with His mercy so fear not, place your trust in Him and have hope in His decree.” (Gems of Jannah).

Barka Juma’at and happy weekend.

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