Bukola Bolarinwa, Sickle cell advocate giving everything for the promulgation of this movement
Bukola is the founder of Haima Health Initiative. She started it in August 2015 after noticing the chronic shortage of blood that plagues the health care sector in Nigeria. She started by working with her family and friends to donate to sickle cell patients, but demand kept growing and she decided to make the service available to all patients in need. Lack of blood causes needless trauma to patients, increasing expenses and sometimes death. She decided to work to create the largest online blood register in Nigeria to connect blood donors to all patients for free. Bukola is also a qualified lawyer and sickle cell advocate. Her work in this field has gained her the Commonwealth Queens Young Leaders Award 2017, Future Awards 2016, and the Rotary Club Young Volunteers Award.
I had a really great childhood, with supportive parents, friends and family. I realised as I grew older that some of the things I took for granted were the blessings that people prayed for. I think this combined with my altruistic nature guided by path today.
Sickle Cell experience
Sickle Cell (SCD) is a complicated and unpredictable disease. Like with most people living with it, I have some really bad periods and I have good periods. What has changed is that I know and understand my body a lot more than I did before so I take care of myself better than I used to.
Nigeria’s statistics on Sickle Cell globally
Data shows that Nigeria has the highest number of people living with Sickle Cell Disease in the world as well as the highest number of people that carry the sickle gene (AS). 150,000 children are born with SCD in Nigeria every year, out of which over a third die before the age of 5.
How did you kick start the blood register?
We started because we kept getting calls from people living with SCD for blood donors and we were no longer able to fulfil the demands with just our immediate network of friends and family. We use social media and the internet to educate, recruit and register voluntary blood donors online.
Encouraging people to donate blood in most African countries is tough, but in Nigeria there is a lot of fear and hesitation about the process especially due to safety concerns and lack of trust in the Nigerian health care system. There is also an expectation to be rewarded for donating blood which is something we try to work against.
What has changed?
The responses have been mixed, we get a lot of people that will out rightly refuse to donate because the knowledge about the importance of blood donation has not be taught at a young age when it should be. At the same time, we have had people go to incredible lengths to donate to strangers and every time we fulfil a request, it feels very rewarding for the team. A big success is also assembling a team that is passionate about our goals. Ameena, Odidi, Tobi and Sameera who work on blood requests get calls at all hours of the night and sacrifice a lot to make sure that patients get the blood they need.
What are your personal and professional challenges?
My goals are to build a Haima team in every state in Nigeria, encourage more people to donate blood and to use technology to make the process work better. We aim to register a million people as voluntary blood donors before the end of 2018.
Reports have it that there is a cure for SCD, what is your view on this?
Yes, there is a cure for SCD which is the Bone Marrow or Stem Cell transplant. This works by taking the stem cells of a matching donor, usually a sibling and transplanting it into the person living with SCD. This will allow them to produce red blood cells with the genotype of the donor and stop all the complications associated with SCD.
Award from the Queen
It was an amazing experience. I was selected as part of the Commonwealth Queens Young Leaders Program from Nigeria based on my work raising awareness about blood donation and sickle cell. We got leadership courses, mentorship and a 2 week residential program in the UK. This included meeting with leaders of businesses, politicians and celebrities. The award ceremony was presented by Her Majesty the Queen.
What is next?
There are a number of things I am working on to improve the lives of people living with SCD in Nigeria. This includes helping to build a registry of stem cell donors to allow more people find their matches as well as fundraising for more people to have life saving surgeries. I hope to build Haima into a self sustaining health start up and to improve policies for our health care systems.
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