DAMANKO — It was a little past five in the morning. The entire Damanko community was quiet, apart from the occasional chirping of birds. In an open space that serves as a shrine, a herbalist moved towards a seated mother and her baby. As he got closer, his fingers shook slightly as his razor cut deep into the baby’s skin. The baby let out a shrill cry. The mother looked on with little emotion.

Two nights before, the mother seemed helpless at the plight of her only child. “Since I gave birth to him, he had been falling sick. I have taken him to the doctor, who told me my child has sickle cell. But now everyone is telling me his illness is not a medical condition.”

In the chambers of her home that night, she made a decision to take the child to the herbalist. To her, it was the last resort. It is also an inexpensive cure to a persistent affliction. She listed the cost for seeing the herbalist for healing: one multi-colored fowl, a bottle of local gin and a cash amount of forty cedis (less than $20).

After the cutting into the baby’s skin, the herbalist skillfully applied a black concoction to the bleeding wound. He later handed a similar concoction to the mother. He commanded her to drink it and give some to the baby. She did, but the baby resisted. “You can drink all,” the herbalist told the mother. “Make sure you breastfeed him, so he can have a taste.

She trusts the herbalist. In the entire village of Damanko, he is known for treating sickle cell.

Sickle cell is a genetic disease, which affects the blood vessels. It has no known cure, apart from a few breakthroughs in stem cell transplants. Doctors often advice those with the disorder to follow certain healthy lifestyles. Yet, an investigation for the New Crusading GUIDE – which included visits to some communities in the Volta and Northern regions of Ghana, interviews with patients, herbalists, parents and doctors – uncovered multiple myths, misconceptions and malpractices surrounding sickle cell disease.

Sickle cell disease affects the hemoglobin within the red blood cells. Hemoglobin is the main ingredient in red blood cells. It helps red blood cells carry oxygen from the lungs to other parts of the body. Normal red blood cells have hemoglobin A, which helps keeps red blood cells soft and round; it allows them to be flexible and flow easily through small blood vessels. People with sickle cell disease have hemoglobin S (also called sickle hemoglobin) in their red blood cells. Under certain circumstances, hemoglobin S causes the blood cells to become hard and form a sickle (or banana) shape. Sickle shaped hemoglobin can block small blood vessels causing complications such as, pain, organ damage, sequestration or stroke.

There are several different types of sickle cell disease. Sickle cell disease is the name for a group of disorders that all have predominantly sickle hemoglobin.

As an inherited condition, a gene is often passed on from a parent carrying it to male and female children. In order for sickle cell anemia to occur, a sickle cell gene must be inherited from both the mother and the father, so that the child has two sickle cell genes. The inheritance of just one sickle gene is called sickle cell trait or the “carrier” state. The trait does not cause sickle cell anemia. Persons with sickle cell trait usually do not have many symptoms of disease and have hospitalization rates and life expectancies identical to unaffected people. When two carriers of sickle cell trait mate, their offspring have a one in four chance of having sickle cell anemia.
The World Health Organization projects that as many as 30 percent of Ghanaians are carriers of the sickle cell trait. An estimated 15,000 children are born with the disease in Ghana annually. In the absence of knowledge on how to manage the disease, many go in search of their own cures.

A Historical Trail

It is called AHATORR in Damanko and surrounding communities. In the Dagbani dialect of Northern Ghana, it is known as “Chihibu.” Though the name varies across communities, it is a traditional treatment of sickle cell.

Fauzia shows scars from herbalist's razor.

Fauzia shows scars from herbalist’s razor.

The procedure involves cutting several openings into the skin with knives to introduce boiled herbs directly into the blood stream.

Herbalists who perform this treatment believe that the sickled shape of the red blood cells is due to biting worms inside the skin and that the openings will allow the worms to break free, thus ending the “crisis,” episodic pain experienced by people living with the disease.

About twenty years ago, Fauzia Ibrahim Mobila went through the same procedure. Born to parents who had no idea about the disease, Fauzia describes a childhood of pain from the herbalist’s razor. “They had to cut my skin and put herbs which were as hot as pepper. It happened several times and you can see the scars all over my skin,” she said, as she showed a long trail of healed wounds.

She recounts weeks when she had to skip school in order to have the traditional procedure. “I was in a room all alone, naked and I had to sleep in herbs on the floor.”

“In a way, I wanted it because I wanted the bullying in my school to stop. But a few weeks after the procedure, I had a crisis,” she said.

It took fourteen years before her parents found out that she had sickle cell. “By that time, we had already done the traditional cure. It lessened the pain for a while, but what the hospital did was more effective.”

National Efforts

For a long time, sickle cell disease was considered a death sentence in parts of Ghana. You could not live beyond certain ages due to the absence of care.

Professor Kwaku Ohene Frempong talks about sickle cell in Ghana.

Professor Kwaku Ohene Frempong talks about sickle cell in Ghana.

Gradually, things started improving. In 1991, Dr. Kwaku Ohene-Frempong of the Children’s Hospital of Philadelphia first introduced the idea of newborn screening and testing for sickle cell.

After talks with Ghana’s Ministry of Health, Dr. Ohene-Frempong started a pilot project for newborn screening in the Ashanti region. Samples from the screening were tested at the Nuguchi Memorial Research Centre in Accra.

“The results from the first few years were very impressive,” Dr. Ohene-Frempong said in an interview.

From February 13, 1995 (when newborn testing was started), to December 31, 2012, the newborn screening programme Ghana had screened three hundred and sixty-eight thousand, one hundred and sixty-four babies (368,164 babies), diagnosed SCD in six thousand, four hundred and fifty (6,450) (1.8%).

More than 5,000 of the babies with SCD had registered for health care at the Sickle Cell Clinic at Komfo Anokye Teaching Hospital. All those babies are placed on penicillin prophylaxis until at least five years of age.

There is evidence that early detection of sickle cell anemia is a great way of helping children overcome the disorder. Detection is often followed by prophylactic oral penicillin that substantially reduces the risk of serious infections during the first few years of life. Detection of sickle cell disease at an early age also permits counseling for family members about disease management and future reproductive decisions.

Beyond that, a good health care system is needed for people with sickle cell disorder to thrive and survive. This issue of health infrastructure has been one key challenge for people with the sickle cell disorder.

Although Ghana’s Ministry of Health has plans to extend the newborn screening across the country, this is still a plan. As the nation awaits plans by the health ministry to extend the newborn screening to every part of Ghana, individuals such as Fauzia and other families have to grapple with the daily realities of living with the disorder.

The Nigerian Example and a Saving Drug

By virtue of its large population, Nigeria has the highest pool of the sickle cell traits in the world. It is estimated that over 40 million Nigerians are carriers of the trait. Some 150, 000 babies are born with the disease every year.

Scientists working on a new sickle cell drug.

Scientists working on a new sickle cell drug.

In order to focus on these important issues, the Sickle Cell Foundation Nigeria was established in November 1994, as a non-governmental and non-profit making organisation dedicated to the proper care and control of sickle cell disorder in Nigeria.
Founder of the Foundation, Professor Olu Akinyanju disclosed in an interview that having a well-equiped center in Nigeria has been a major intervention in helping those with the disorder.
“With the help of corporate institutions and individuals, we’ve managed to put up the first comprehensive sickle cell centre in Nigeria.”

Founder of Nigeria's Sickle Cell Foundation

Founder of Nigeria’s Sickle Cell Foundation

Aside the centre, the Nigerian Institute for Pharmaceutical Research and Development (NIPRD) has worked in partnership with a local herbalist to produce a new drug. The drug, called NiPRISAN, has undergone some clinical trials and passed as an effective drug for managing sickle cell crisis. It is made from four botanical species indigenous to Nigeria.

In an interview, director-general of NIPRD, Karniyus Gamanie told this reporter that the new drug might soon be rolled out in commercial quantities for the global market.

This report is part of health stories reported for the African Story Challenge, a competition by the African Media Initiative. The documentary is airing on GBC24 from now till the end of March, 2014.