Tunrayo Adenle-Oluwole, is a woman of many parts; she is a wife, mother, an entrepreneur, an advocate, sickle cell warrior and the founder of SWINT Foundation. With YEJIDE GBENGA-OGUNDARE, she speaks about the plight of women living with sickle cell, the battle for a normal life and other issues.
We just celebrated the world sickle cell day. How will you assess the plight of women living with sickle cell disease (SCD)?
Well, naturally, women living with sickle cell disease face huge challenges, we all know that women are more vulnerable in all situations. There is a lot of stigmatisation, discrimination still going on and being faced by the female gender and women with SCD are not left behind, they face more challenges than the average woman. They face rejection from many quarters including close associates; intending partners, the supposed partner’s family and relatives. I’m even more concerned about those that are suffering from physical disabilities as a result of sickle cell complications like AVN and leg ulcer, it’s a lot of challenges coping with everyday life and the society does not make it easier on them.
Is there adequate provision for people living with sickle cell disease?
To be honest, there is no adequate provision for them and this is quite unfortunate because we all know that living with SCD is very expensive and a bit on the high side to manage.
How can they live a normal life?
Normal life is a bit subjective because the reality of each person determines what they consider normal life but living a normal life starts with acceptance into the society and access to adequate health care system, equal job opportunities, fairplay and understanding at work place. For people living with sickle cell disease, living a normal life has to do with operating in an atmosphere that caters for their peculiarities and allows them equal opportunities while managing their health.
As an advocate that understands their plight better, how have you helped women in this situation?
Well, through the SWINT Foundation (Sickle Women International) which I established, I have been able to help women within my reach by encouraging them to build their self confidence, teach them to be comfortable in their skin (self love and care), spur their “can do spirit” and strike a balance in their physical, emotional, mental and psychological well being as SCD is a manifold disorder . We cannot overemphasise the power of the mind and the need for a support system and it is this support system that I have been able to put together for the women community living with sickle cell in Ibadan
Is this the factor that influenced the centre you opened and what’s the purpose?
The main purpose of opening our Ibadan secretariat office is to create a meeting point for female warriors because a lot of people when they reach out to me, still ask to see me in person even after discussing with them on the phone, so there seems to be a void that needs to be filled in the area of counseling. At the moment there are ongoing discussions with specialist hospital in area of treatment of sickle cell complications like AVN, leg ulcer etc. Also SWINT Foundation is trying to build a close knit community for female warriors, a place where we can meet on a regular basis, to express our fears, challenges and give each other a shoulder to lean on, it is usually difficult to be understood by someone who is not in a similar situation. We intend organising periodical medical outreach and hangouts to lighten the moods of our warriors.
How has SWINT impacted the sickle cell community?
SWINT Foundation has been able to impact its online members positively. We have an online platform where members come to relieve their burdens and that is exactly what we are trying to recreate at our physical community, the office is barely two months old, and so I’m seizing this opportunity to call on female warriors in Ibadan and its environs to come on board.
What do you expect from government?
That’s interesting and a good question. We actually desire a lot from government but let me just itemise few; functional health insurance, government jobs for warriors and good emergency medical attention in government hospitals. Also, when there is a job to earn an income and good healthcare service, we can take it further from there.
What is your advice for women living with sickle cell?
My advice is self love and self care. Until you love yourself very well, nobody will, and the way you care for yourself will determine how others will care for you. My slogan is “YOU COME FIRST”.
How will you access Nigeria in terms of taking care of sickle cell patients?
Nigeria is way behind in the care of people living with SCD; we have very few specialist doctors (Hematologist) to go round the 36 states of the federation, a lot of research has to be done for better management of the disorder as Nigeria has the highest number of people living with the disorder.
Basic treatment of SCD should be taught in our Medical schools, I have had several instances of where I will be the one to tell doctors how to treat me when I have to use other hospitals in case of emergencies.
How expensive is it to live a good life with sickle cell?
Sickle cell is a very tedious and expensive disorder to live with, I usually joke that if not for sickle cell, my family and I would have been super rich, because SCD does not only cost you money, it also cost you a lot of opportunities as you tend to cancel a lot of appointments as the disorder is not predictable.
What is required in terms of emotional and physical support for those living with it?
That’s very simple, faith in God, love, empathy and money.
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