The need for demystification of cultural views of Sickle Cell Disease saga

What is Sickle Cell Disease?

Sickle Cell Disease (SCD) is a severe hereditary form of anemia in which a mutated form of hemoglobin distorts the red blood cells into a crescent shape at low oxygen levels. It is most common among those of African descent. Sickle cell anemia is an inherited form of anemia — a condition in which there aren’t enough healthy red blood cells to carry adequate oxygen throughout your body.

Normally, your red blood cells are flexible and round, moving easily through your blood vessels. In sickle cell anemia, the red blood cells become rigid and sticky and are shaped like sickles or crescent moons. These irregularly shaped cells can get stuck in small blood vessels, which can slow or block blood flow and oxygen to parts of the body.

There’s no cure for most people with sickle cell anemia. But treatments can relieve pain and help prevent problems associated with the disease.

Approximately 70,000 to 100,000 Americans have sickle cell disease, the most common form of an inherited blood disorder. This disease, which is present in affected individuals at birth, causes the production of abnormal hemoglobin. If you have sickle cell disease, you will pass one sickle cell gene to your children.

Sickle cell disease is more common in certain ethnic groups, including: People of African descent, including African-Americans (among who 1 in 12 carries a sickle cell gene) Hispanic-Americans from Central and South America. People of Middle Eastern, Asian, Indian, and Mediterranean descent.

SCD patients in the developed world account for only 10% of the world’s SCD patient population. In 2008, United Nations reported estimates that there are between 20 and 25 million people worldwide living with SCD, of which 12–15 million live in Africa. About 10% of blacks in the United States have one copy of the gene for sickle cell disease (that is, they have sickle cell trait). People who have sickle cell trait do not develop sickle cell disease, but they do have increased risks of some complications such as blood in their urine.

How rampant is this disease in Nigeria?

Nigeria is the country with the highest burden of sickle cell disorder in the world. Over 150,000 babies are born each year with sickle cell anemia in Nigeria. Over 40 million Nigerians are carriers of the sickle cell gene. People with sickle cell usually suffer severe pain.

How Fatal is SCD?

A stroke can be fatal. Acute chest syndrome. This life-threatening complication causes chest pain, fever and difficulty breathing. Acute chest syndrome can be caused by a lung infection or by sickle cells blocking blood vessels in your lungs.

Cultural Views of SCD the Western Nigeria

SCD which is translated in Yoruba language of the Western Nigeria as “Sege Sege Arun inu Eje” it means a very fatal and dreadful disease of the blood. There are various views and concept to this SCD from the primitive or cultural point of view. The most popular of this philosophy is the term “Abiku” which direct translation means “Born to Die” because their life span is very short. Most SCD babies die before their fifth 5th Birth day. It is thought as a mysterious ailment, having no cure. As a punishment from the gods.

So many western states of Nigeria belief SCD child is a child that brings a CURSE to the family, mainly because they see the amount of efforts expended by all the family members in terms of finance, care, love and running around all the times; when the child thus have his Painful episodes – SCD CRISES even the sight of watching the child go through the episode of pain and agony.

In most cases, after all the aforementioned efforts, the child still dies. Bringing even much more pain and suffering to the entire family. Especially if such child happen to be the only child of the family. So, in an attempt to avert this pain, various culture or families do have different means to sustain the child, by performing lots of rituals to try keep the child with SCD alive.

The Perception of the rural and cultural engulfed persons is rarely unfair towards the group of persons with incurable diseases such as SCD especially, that which cost them lots of pain and energy assertions. Grievous folks in the family lines are giving to; or more quick to the encouragement of ritual sacrifices to be made to the gods for and on behalf of such patients.

Ritual Solutions to Sickle Cell Disease (SCD)

Nigerian society tends to tie their problem to spiritual. When something goes wrong with the health of an individual or his family, they immediately wondered who had caused it to happen. In most cases, the individual would suspect that someone had used evil magic, sorcery, or witchcraft against him or his household, animals, or fields. This perception and belief is usually trend in all 36 states in Nigeria, including Federal Capital Usually traditional religion worshipper hate and fear these forces, Christians do not believe that sorcerers, witches, and charms have any effect on people or them. Christians denounces or condemned magic; they use prayers and fasting to drive away danger and difficulties. In situations where a native doctor was consulted for solutions to family problem to appease the gods, Christian converts in the family insisted that prayer through their priests would be the solution.

The most unthinkable aspect of these ritual ideologies is predicated upon the primitive thought system, created for many years; passed down from generation to generation. Some family clans, for example in South West states are quite forceful or coercive in their approach towards Spiritual Cleansing for their children (members) claiming all the offspring in their lineage as “Omo waa!” meaning ‘Our children’ Any attempt for any person to refute or refrain from the ritual rites is considered “Height of Insubordination” a great disrespect to the elders of the family and to the gods of their ancestors. Various punitive measures accrued; and would be melted upon any of such individual. They may invoke the wrath of the gods upon them, anywhere they are found, they would be brought before the gods at the post of the shrine in the village. Where unanimous punishment would be pronounced and inflicted. Sad to see that persecution of these sort are still being found amongst people even at family level.

They profess the only solution comes from the gods; really in the process these could lead to any other thing namely death, autism or complete healing etc.

Finding it extremely hard to believe that such things are still been practiced amongst people in Nigeria. From our recent finding 45% Ogun; 35% Osun and 20% Oyo State respectively from our most recent statistics assert that Spiritual Cleaning are being practiced in their locations for SCD persons referred to as “Abiku” or “Born to Die” in order to determine how long such child would live; whether or not the child would survive; so as to know if further Rituals and Sacrifices are needed going forward.

Need for a Federal Legislation on the persecution of unyielding parents.

In conclusion, I write to sensitise all stakeholders, human right activists and the government arms, to enact laws to abolish any act to compel anyone; to succumb to ritual assignment against their will; just because of family link or because of any ailment. I decry every persecution or aggression from any family member for refuting to surrender to; or their wards to any extended family member for ritual or spiritual cleansing for SCD or any incurable disease, as SCD condition are basically medical condition and not spiritual problems. The Ritualist and Ifa priest only act in error. I recommend therefore a legislation to this effect.