A candle does not lose any of its light when lighting another candle!

One day a year is definitely not enough to celebrate the courage of patients, educate the population, and raise awareness of a disease that has eaten deep into the fabric of the nation. Almost every family has a story.

Nnamdi’s birth was celebrated with pomp and pomp. By the age of three, she had made so many visits to the hospital that her parents lost count. One day, his parents traveled to the city with him and he had a seizure and was hospitalized. It was then that his parents realized that SS was born from the union of AS and AS.

Fola and Aminu knew they were both carriers, but their love for each other was so strong that all warnings fell on deaf ears. After 10 years of marriage and two offspring burials, individually they began to wonder if love is stronger than the pangs of grief.

Ajadi was in good health until a sore in his old age led him to visit the hospital. There they tested him and told him that he was a “more sickle”. Since the types of symptoms described were foreign to him, the doctors began questioning him about his diet. Ajadi of Ekiti for most of his life had eaten more yams for breakfast and mashed yams for lunch. His diet changed recently, causing his immunity to collapse. From the research that was carried out, it was found that Yam has anti-sickle cell agents and because it is natural it has little to no side effects. Ugwu was also found to produce iron and increase blood count. So what magic can a yam and ugwu (small portion) diet do in an anemic patient?

Nigeria is blessed with many natural and human resources meant to sustain us, sadly these resources are not well researched nor are the medicinal properties of herbs and foods harnessed for maximum benefit.

Ignorance about sickle cell anemia has given birth to more patients. According to Deaconess Toyin Adesola, author of Still Standing, whose parents, through the medical staff (surgeon and nurse), married even though they both had the AS genotype, “My parents got married in the ’60s and hardly anyone knew about the SCA at that time. .” Lack of information and education about the transmission, effects, and management of S cells continue to make many regret asking for love’s amendment.

A few years ago, Ms. Funke Akiyode, founder of Shout Global Health Inc, attended a sickle cell conference in Baltimore, where she met a man she identified as “Baba.” Baba, then in his sixties, had come to share a recipe for rare herbs that has become a saving grace for the S-cell children in his community. Not long after, Baba traveled to the afterlife, but not without passing the recipe on to his children. Not finding the $3 million needed for Research and Development (R&D), Baba’s sons sold this miracle recipe to business-savvy Indians. The Indians not only started the R&D, but based on a pact and the need to be close to the botanical properties, they located the factory in Nigeria. True or false; it is said that this is the story that gave birth to Nicosan.

President Olusegun Obasanjo’s launch of the Xechem factory took place amidst a great deal of media bling-bling. Commercial production began in 2006, but the drug, which sold for N3,000, or $20, was of course not affordable for the average Nigerian.

But the originally indigenous Nicosan (Hemoxin in the US), formerly known as Niprisan and Nix 0699, which was investigated by the National Institute for Pharmaceutical Research and Development (NIPRD), became a miracle drug that prevented patients with informed and financially capable S cells were in pain and making monthly rounds to the hospital for transfusions or the like, thus leading them to live a normal life. Unfortunately, the medicine became inaccessible due to the order to stop production.

Many questions come to mind – Why was the original herbal recipe sold? How much? Why did the plans to have Xechem on the US Stock Market fail? Why did Xechem USA file for bankruptcy? Did Xechem Nigeria really lose its production license? How extensive was the research leading to mass production of the drug? Why was the factory located in Nigeria? Answers may lie ahead for years as many souls continue to languish in excruciating pain leading to many deaths around the world, but the most important question we need to answer now is: why did production stop and how can we start production? for Save lives?

A loan made jointly by NEXIM, Diamond Bank and Bank PHB laid off Xechem Nigeria’s production of the drug, but the persistent recovery caused the grantors to reconsider their investment, leading to an embargo on production.

With the embargo on Nicosan production, more Nigerians abroad living with S-cells have turned to hydroxyurea, a drug for abnormal cell diseases such as leukemia, which increases the production of fetal hemoglobin, needed to rejuvenate red blood cells. . Although hydroxyurea works for some, it has many side effects, including the potential to increase cell growth, which can lead to cancer.

In a forceful letter to NEXIM, Diamond Bank and Bank PHB, Ms. Tosin Ola, a self-described sickle-cell warrior, wrote: “Last month, I ran out of Nicosan. Now I’m in the same boat as my friends.” , waiting for evil crises to descend on me like a specter of doom I’m afraid I’ll get sick again, I’m afraid I’ll have to go to the hospital, because sickle cell patients are dying in hospitals from ‘sickle cell related complications ‘ at an alarming rate. Not just here in the United States, but also in Bahrain, Nigeria, India, Jamaica, and Brazil. There is a huge stigma for sickle cell patients around the world, and every time we walk past a hospital We’re playing dice with death Why would you let this be our fate?

I wonder why those in the corridors of power continue to juggle while our human resources are depleted daily due to a disease that can be controlled with a locally produced drug. It is sad that foreign agencies are more concerned with health-related issues, which explains why initiatives for polio eradication, HIV/AIDS prevention, etc. They are often externally driven.

The good news is that Xechem Pharmaceuticals’ near-term plans include closing its New Jersey headquarters to minimize operating costs and resuming production in Nigeria.

June 19 is World Sickle Cell Awareness Day, an event that commemorates the date in 2008 when the United Nations General Assembly adopted a resolution recognizing sickle cell anemia, one of the world’s leading genetic diseases, as a public health problem. The day gives everyone, especially advocates and the media, an opportunity to educate people, raise awareness and possibly break down harmful prejudices about the disease. The disease has serious physical, psychological and social consequences for those affected and their families.

The World Health Organization estimates that Nigeria has 7 million people living with SCD and that SCD contributes to 5% of deaths of children under 5 years of age in some African countries. Although an increasing proportion of affected children now survive beyond 5 years of age, many remain at risk of premature death. With early detection and the use of public health interventions such as penicillin, many of these deaths are preventable. Furthermore, the burden of this disease can be reduced with increased global resources and effective partnerships.

Our government and indeed the health sector must seek greater cooperation to facilitate access to sickle cell information, education, communication, management and treatment. Increase research to determine the prevalence of SCD, develop better management guidelines, and more effectively monitor for complications of the disease. There must be a proactive stance towards improving the proper management of sickle cell anemia to decrease mortality from related diseases. International institutions, development partners, civil society and business should be encouraged to support health systems and the provision of primary health care.

So how can you commemorate the day? Create awareness, especially through social media. Make a presentation at your place of worship. Partner with NGOs and Civil Society. Educate someone or provide free information brochure. Encourage people to get tested for the trait, donate blood, or donate money for sickle cell research. Organize a benefits program or a press conference. Lobby legislators to propose policies that support the establishment of free clinics for indigent patients. Supporting a patient or parent. Take a moment to reflect and pray.

SCD is an inherited group of red blood cell disorders. In people living with SCD, “sickled” or abnormally shaped red blood cells get stuck in small blood vessels and block the flow of blood and oxygen to the body’s organs. These blockages can cause repeated episodes of severe pain, organ damage and serious infections, or even stroke. SCD affects millions of people worldwide and is particularly common among blacks.

The specific goal of the 2011 World Sickle Cell Awareness Day theme – Educate and Unite – is to achieve the United Nations Millennium Development Goal 4, i.e. reduce child mortality by 2015.

Ms. Tosin Ola commented: “The power of intercessory prayer and a shared global consciousness is real, so lift the spirits of all our brothers and sisters. Many of us are depressed, in pain or in hospital, And we could all use some well wishes and love.”

To all of our loved ones living with the S cell, I admire your bravery and pray to God to strengthen you mentally to survive the anemic cell. Together we can change the face of sickle cell anemia.

Anne Muyiwa is Project Manager for Cares Global Network. This article also appeared in Punch Newspapers on 06.22.11.