Solace for sickle cell patients in Kaduna
In 2006, Mrs. Badiya Magaji Inuwa lost her 35 year-old son to sickle cell anemia. Since then, she has been involved in the fight against the killer disease to ensure that no one suffers or dies from the ailment.
She started a Non-Governmental Organization (NGO) called the Sickle Cell Patients Health Promotion Center (SCPHPC) in 2007 to help the less privileged, create awareness and provide drugs free of charge.
Married to Alhaji Magaji Inuwa, Mrs. Badiya and her husband are of the AS genotype and had two children who have the sickle cell gene one of which is late.
Narrating her ordeal to our correspondent at the commissioning ceremony of the permanent site of the center in Badarawa, Kaduna, Mrs. Badiya said, “I lost my son to sickle cell disease and it was after his death that I decided to set up an NGO so that I can help the less privileged because when he was alive I know what I went through”.
“Sickle cell is a disease that touches everybody especially the less privileged. I decided to start an NGO so that I can assist them with their routine medication every month,” she explained.
On how she hopes to maintain the NGO, she said, “My husband and some close associates of mine have been supporting me, but recently I sent letters to some individuals, companies to seek for assistance. Some have actually donated while others are still promising to assist, but they will.
“I have also sought for assistance from the Kaduna state government because this is her people and I am just trying to assist since I know the consequences but they promised to help unfortunately I have not heard from them.
“When I started some five years ago, I had about a 100 children, but being a mother of “sicklers”, with experience about the ailment, I never turned anyone back so now we have over 2,500 registered patients who attend clinics every month.
“I encourage them to take their drugs regularly so that they can live normal lives” she said optimistically.
On if there is any form of enlightenment on preventive measures against the ailment; she said that the government needs to create awareness to enlighten the public.
“Giving them drugs is not the solution, people that have the same genotypes like AS should not marry so that they don’t have sickle cell children, otherwise we cannot reach our aim which is to stop sickle cell. We need to discourage people from reproducing the virus.
“We have patients from 6 months to 40 year-old receiving treatments in our center. I have a very small work force and I cannot say how we have been coping, because since we started our patients have not brought even N5 to collect their routine drugs, we don’t know how it is happening but it is,” she stated.
On her part, Maryam Abubakar, a 22 year-old sickle cell carrier and one of the beneficiaries of the center who is an indigene of Kaduna state said the center has helped her a lot in managing her ailment.
“I live with my parents in Unguwan Rimi, Kaduna. Halima Abubakar is my mother’s name and my father is Abubakar Ayuba. We are eight in number, four of us have the sickle cell anemia but I am the only surviving one out of the four because the rest died due to the extent of their disease but the remaining four of my siblings are not carriers of the disease.
“It is not easy managing my ailment because I don’t have access to a health center. When my crisis starts and am taken to a government hospital by my parents due to the long queues, by the time it is my turn to see the doctor, my crises has already become severe.
“But with the coming of this center, I have had fewer crises because of the drugs we are given free of charge which help in maintaining the crises and reducing its occurrence. At the center, the volunteers and health workers counsel us on how to manage crisis and also encourage us to take our drugs constantly,” she emphasized.
She maintained that at the center, the patients are also counselled on the type of food they ought to eat which will reduce the occurrence of their crisis and also how to take care of themselves especially during the cold season.
She noted that her parents have been very supportive and are doing what they can in their own capacity to cater for her needs.
“My father is a staff of the Nigerian Telecommunication Company (NITEL) and my mother is a house wife but she also engages in small business such as buying and selling of wrappers amongst others so they do not have the capacity to take care of me and also send me to the university,” she stated
One of the volunteers at the center Yusuf Adamu Yakubu who is also a sickle cell carrier said his main function as a volunteer is to help the patients and the executives of the center carry out the day to day activities there.
“Mostly the functions include giving patients their medications.
“The surprising thing is that my sickle cell is minor, being the type SC, C is a very rear genotype found in one in a thousand. Mine is not as severe as others but that does not mean I don’t get the illness from time to time.
“Do not criticize the parents of these patients, no matter how long, always try to encourage them and let them know that it is their responsibility to take care of that child,” he maintained.
He lamented that most parents do not show love and attention to their wards with sickle cell and that is why the center is able to draw a lot of people from far.
He advised that the fathers should be actively involved in taking care of such children and not leave the responsibility to the mothers alone, so that the child does not seek solace from strangers”.
The District Head of Malali, Alhaji Shehu Jae called on the government to support the center so that it can perform its duties saying, “Sickle cell is far more dangerous and widely spread than polio, so the government should partner with such organizations so that people living with sickle cell will be adequately taken care of.
On her part, Hajiya Sadiya Abdu advocated that couples who intend to get married should go for test before marriage with a view to decreasing and eventually eradicating the disease in Nigeria.
“Christians who are getting married in the church have to go for a sickle cell test before they are allowed to get married and if it is found that both of the couple are carriers, the church does not conduct the marriage except if they go somewhere else and get married,” she emphasized.
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