Victory comes from finding opportunities in problems! with this thought, my philosophy in life is to identify a nagging problem in society and offer realistic solutions through communication and implementation science. This became a reality when the African Research and Innovative Initiative for Sickle cell Education (ARISE) opportunity was offered to me it’s like a dream come true! My passion for Sickle cell disease (SCD) is to ensure that people with SCD are treated equally without discrimination through the dissemination of information about the existence and management of the disease.
I am an information scientist at Kaduna State University with over 15 years of dissemination of information in various formats and to different categories of individuals and groups. Due to my profession, I was involved in work package 7 in the UK at GUYs and St Thomas hospital London and work package 2 in Italy at Fondazione Gianni Benzi Onlus. The objective for work package 7 is to acquire knowledge on communication and dissemination on creating awareness about SCD and ARISE project and package 2 is to contribute to a manuscript describing ethics requirements to conduct clinical and genetic research studies on haemoglobinopathies worldwide.
In the UK I was trained in SCD outreach activities particularly in creating awareness and educating the community about SCD. The areas covered include
- Newborn screening and child screening during immunization programmes
- neonatal, pre-conception and haemoglobin phenotype counselling
- organize community outreach on blood donation, and fundraising targeted to the youth, students, social, religious and traditional communities
- Implementation science on how to transform research into real-life (practical)
- Administrative and management skill training for capacity building
I feel highly delighted to have been trained by some of the best SCD scholars and health professionals in the UK as doctors, nurses, psychologists, therapists, and administrative staff. Most training was at Evelina London Children’s Hospital, Sickle Society UK, Guys Hospital UK and Sickle Cell & Thalassaemia Community Services UK.
Additionally, I attended two conferences the Annual Sickle Cell and Thalassaemia Conference (ASCAT), it was an honor to be a member of the ASCAT local organizing committee, and also served as a volunteer during the event. The second conference was the Sickle cell society UK conference 2022 and I got the privilege to register as a member of the UK sickle cell society. Another remarkable achievement is the resuscitation of KASU library SCD activities and increases in the number of volunteers for the Kaduna outreach/community activities and we have merged the team with the arise school program. I was able to organize and catalog past and present ARISE documents for uploading Clinibee App.
While in Italy, I worked with a team on a manuscript describing ethical requirements to conduct clinical and genetic research studies on hemoglobinopathies worldwide. Our investigation is on multination clinical research, ethical considerations, data sharing, biomedical specimens, and genetic research involving human samples. To investigate what is obtainable nationally and internationally regarding the already-mentioned concepts.
Finally, I sincerely appreciate the Arise Project Management; Fedele (Duccio) Bonifazi, Baba Inusa, and project officials in Italy and UK for this opportunity. Many thanks to my Team lead and members in Kaduna (BDTH, PANAF, KSHA, KASU, and Community Volunteers) for their sincere support. My profound appreciation to the Vice Chancellor of Kaduna State University; Prof. Abudullahi I Musa for your mentorship and support.
May God help us actualize our dreams of making people living with SCD have an enjoyable life
You can find a summary of my experience here. Useful advices for upcoming secondees are available here.
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