World Sickle Cell Day: Valuechain Foundation’s Week-long Awareness Campaign
-By Hauwa Mohammed Lawal
World Sickle Cell Day is observed every year on June 19, to create awareness on Sickle Cell Disease (SCD), which is an inherited blood disorder that causes sickle-shaped red blood cells that can stick together, blocking blood flow and oxygen from reaching all parts of the body.
People with SCD can experience pain, anemia, infection, and other serious health problems (also known as complications) that may require care by a healthcare provider.
When health problems, such as serious pain (also known as pain crisis), cannot be managed at home, children and adults with SCD often require care in specialised hospitals that handle such treatments.
Following the need to spread awareness on the causes and ways to manage the disease, the United Nations General Assembly, in 2008, set aside a special day for sickle cell globally. It was celebrated for the first time on June 19, 2009.
This year’s Sickle Cell Day in Nigeria, was well marked by several groups – both governmental and non-governmental.
One group that stood out in marking it this year is the Valuechain Sickle Cell Foundation, which embarked on a week-long activity to create awareness, as well as provide succour for the patients living with SCD.
In an unprecedented move, no fewer than 60,000 tablets each of Folic Acid and Paludrine were presented to three strategic healthcare centres in Kaduna State by the Foundation.
Valuechain kick-started its week-long activities at the Kaduna State University Teaching Hospital, popularly known as Barau Dikko Specialist Hospital (aka) Nursing Home, where Insecticide Treated Mosquito Nets (ITNs) and drugs were presented to the hospital’s management for onward free distribution to the patients.
During the visit on Wednesday, June 16, 2021, Founder of the Valuechain Sickle Cell Foundation and Publisher of the Valuechain Magazine, Musa Bashir Usman, in his remarks, said they were there on a sensitisation visit, and also to present their donations to the hospital.
He said the Foundation, which was established in 2019, was formed by people of like minds who had experienced the pains of SCD directly through close relatives, thereby resolved to form a platform that will assist in mitigating the disease in Nigeria.
He explained that sensitisation is important to let people know what the sickle cell anaemia is, how people can get infected with the disease, and better ways to manage the symptoms.
The Valuechain Sickle Cell Foundation CEO advised that whoever is a patient of sickle cell deserves a lot of love and affection to strengthen them.
He said they were at Barau Dikko days ahead of the World Sickle Cell Day, because it was the clinical day of the patients.
“You are not the only ones going through this crisis. Several others are also sickle cell patients. It is not a death sentence. Try to adhere to the doctors’ prescription, and I pray God will keep you healthy.
“We have it on record that some (people) with sickle cell disease even live beyond life expectancy in NIgeria, as records available have shown that some patients lived up to 90 years,” he added.
While commenting on the government’s efforts towards managing the disease in the country, Usman said the government was trying its best because the treatment for sickle cell is subsidised.
“Government can still do more. They should place this disease as one of the health care intervention priorities. They should also create more awareness to prevent the disease, because in places like Europe, I doubt, if they still record cases because of the level of awareness,” he added.
Speaking when the Foundation visited Jamaatu Nasrul Islam to donate drugs and other materials, the Foundation’s Deputy Coordinator, who is also a Sickle Cell Warrior, Miss Hauwa Mohammed Lawal, advised patients to rest well, drink lots of water, and adhere to doctors’ prescriptions.
She said that she was diagnosed with sickle cell when she was six months old, but through careful adherence to the drug regimen and healthy lifestyle, she has been able to survive this far.
Receiving the donated items from the Valuechain team, HOD Pediatrics Section, Barau Dikko Specialist Hospital, Dr. Lawal Haliru, thanked Valuechain Foundation, and those who made the donations possible.
Haliru, who is a Consultant Pediatrician, called on others to emulate them and come to the aid of patients.
“They are on medication for life, and they need support to sustain the drug therapy,” he said.
Not resting on its oars, the Foundation also featured on a one-hour live radio phone-in programme to further create enlightenment on Freedom FM where the general public, through the mass medium, was educated on the need to prevent sickle cell occurrence by conducting their genotype tests before going into marriage.
Similarly, all through the week, pamphlets printed by the Valuechain Foundation were distributed along the streets, religious centres and health facilities across Kaduna metropolitan and in Zaria.
The distributed pamphlets also contained useful information on how to remain healthy, if one is a sickle cell patient, as well as how to prevent it. It also explicitly explained how to manage sickle cell.
On Saturday, June 19, the Valuechain Foundation team’s train arrived at yet another key health facility in Kaduna metropolis, the Jammatul Nasril Islam (JNI) Hospital at Tudun Wada, Kaduna.
The hospital, which is located in a densely populated area, received several patients, who were either low-income earners or completely lack funds to adequately fund their health challenges.
At JNI Hospital, Usman advocated for the setting up of special centres to cater for sickle cell patients.
He made the call, while presenting items to the hospital.
According to him, his foundation was at the health facility to donate drugs and other items, including ITNs to patients as part of the Foundation’s activities to mark the World Sickle Cell Day.
“We have special centres that deal with cancer, diabetes, and other health conditions in Nigeria, but you rarely see a sickle cell centre.
“We are appealing that special centres are set up to ensure that patients live life to the fullest,” he said.
He stressed that there was the need for more sensitisation on the dangers of sickle cell and how to prevent it.
“Let everyone know that the lives of sickle cell patients matter, and know how to prevent it. For those that are already affected, let’s see how we can support them to live quality lives, and prevent future cases through deliberate enlightenment and aggressive sensitization.
“What we are donating today is bought with funds received as donations from well-meaning Nigerians, and our Trustees. We rally round to get drugs and other essential items that can alleviate pains of those affected.
“We have seen some patients live up to 80, 85 years. We don’t want anybody to die. For those that are not yet married, we want to create awareness to ensure that they marry the right genotypes,” he added.
In his response, after receiving the items, the Acting Chief Medical Director of JNI Hospital, Kaduna, Dr. Ibrahim Ahmed, said that they were grateful and excited by the donation.
“If more people do it this way, most patients will not have problems. What is delaying them from taking their drug regimen is lack of finance,” he said.
Speaking further, he said that people should not just wait for the World Sickle Cell Day to sensitise, but do it daily.
“Every day is a day of awareness. Let’s start it from the grassroots. Let’s counsel them before the marriage.
“If the genotype is not compatible, they should not even marry at all to prevent sickle cell,” he said.
In rounding up the week, the Valuechain Foundation also visited the Ahmadu Bello University Teaching Hospital (ABUTH), Shika-Zaria, where the team also donated ITNs, Paludrine and Folic Acid.
It was a week that was filled with activities on the awareness creation for Sickle Cell Day. The Valuechain Foundation blazed the trail, touching lives of those that are affected by the genotype-induced ailment, and serving as hope for those that are yet unborn by giving them a chance to be born sickle cell free through the right choices by their would-be parents.
