Records from WHO of 2010 – 2011, shows that about 250,000 babies die of Sickle Cell anaemia in Nigeria. Out of 10 families, it’s difficult to find 2 families not facing the problem of sickle cell. In this interview with Hajiya Badiya Inuwa, Founder of Sickle Cell Patient Health Promotion Centre, SCPHPC, She bares her mind on the fact that Sickle Cell is man-made, and not from God. Excerpts:
What is Sickle Cell Patient Health Promotion Centre, SCPHPC all about?
Sickle Cell Patient Health Promotion Centre, SCPHP is a Kaduna based NGO that caters for the sickle cell patients from poor background.
How has it been since you started the foundation?
I started the foundation about 6 years ago and it seems as if we are achieving some things because so far no much problem except for funding. Otherwise our plans are taking shapes accordingly.
What initially informed your decision to set up the foundation?
Like I do say, the foundation is in memory of my late son, Isa Inuwa who died about 7 years ago. He died of sickle cell anaemia. And since I know what we went through and how the poor people are suffering to support them with the routine drugs which they are supposed to take every day and for the rest of their live, I decided to set up an NGO that can cater for the less privileged in the society especially that the poor are always struggling and hustling to put food on their table. So what we do is to cater for the sickle cell patients from the poor who come to our foundation.
We learnt your NGO already has a number of 2000 sickle cell patients, how do you cater for this number?
Well I started with the hope that God will see me through. I came up with plans on how to seek for supports from individuals, banks, corporate associates and other good Samaritans. Wether I write letters to them or not some times if I’m lucky they supply me with drugs. So this is how we have been faring. I plead with people to come and assist the sickle cell patients. I think people don’t have pity on sickle cell patients maybe because they have never seen one in a crisis situation. Because during that crisis period a sickle cell patient needs to take a high dose of pain reliever to relief them from the pains. And if the less privileged cannot afford the drugs, definitely the child will suffer, either you lose the child or the child will suffer for say days or weeks. Some experience the crises 2 to 3 times in a month or monthly. And what I noticed is that the less privileged don’t feed well, they don’t take good nutrition to go with the drugs and that’s why you have so many in the society. The less privileged are faced with the problem of how to provide for feeding and then how to afford the drugs. That’s why I’m trying my best to see how I can come in to help them take care of the drugs on monthly basis. I make a registration card for them to know when I administer the drug on them and when next to come.
Also when they come to the clinic, we sensitise them on the do’s and don’ts, what to eat and what not to eat, their dressing, when to go out and when not to go. We give them lectures on how to go about and also encourage them to ask questions where they are not clear for clarification. And where we have cases beyond our capacity I make consultation with qualified doctors because I’m not a doctor but I have passion for the persons.
Any sense of fulfilment after the day’s job?
Honestly, I always feel happy. And that passion is already in my team.
Any challenges so far?
Funding has been the major challenge. We don’t have enough funds and we are hoping that the government and other good Samaritans in Nigeria would come to our aid to help some of the doctors to start the research on drugs; maybe they will come out with something at the end of the day which will serve as a pain reliever that will suppress the pain when they are in crisis even without bone marrow plant. I’m pleading with the government, well meaning Nigerians and external donors.
Any plans to take sickle cell patients to access the bone marrow plant in Edo State?
Of course, yes I will and I hope whoever had started in Edo will join hands with other doctors within the country so that we will continue to advance so that it will be less expensive; and so that so many people can benefit.
Achievements, pains and gains of running the NGO?
The achievement is people are beginning to see what we are doing particularly with the help of the press. The last time I was on air on a radio station in Kano State and people from that state are planning to put a foundation as such in place in their state. They contacted me to see if I will assist them set it up.
You are not a doctor but you have passion for sickle cell patients?
Right from the time I finished my secondary school I had the intention to attend a nursing school but unfortunately my father diverted my attention by giving out my hand in marriage. Maybe because I was his only child and he needed or was looking forward to get a child.
I read a lot of health journals and maybe that was where I picked interest in health related issues. Sickle cell anaemia is a man made disease and not God because these days couples don’t go for blood test before walking to the altar. They no longer go for genocide test before marriage takes place and you will find out that the more they give birth the more the children are sickle cell patients.
Unfortunately, in Africa we attribute it to God but it is man-made.
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