Judith Ojonugwa Matthew: A Sickle Cell Warrior’s Journey of Strength, Advocacy, and Hope

At The MHM Magazine, we are dedicated to voicing voices that matter—and few voices call out more fearlessly in courage than Judith Ojonugwa Matthew.

A sickle cell warrior from Kogi State, Judith’s narrative is one of strength, purpose, and empowerment. From battling near-death experiences to creating the Judith Ojonugwa Sickle Cell Foundation, she has turned pain into advocacy and silence into a voice for change.

In this interview, she speaks candidly of her own personal experiences, challenges, and dreams for a society where sickle cell warriors are empowered, not stigmatized. Her story is not simply individual—it’s a witness that strength is often not hidden behind ease, but in fronting up, speaking up, and persevering daily.

Can you share your personal journey with sickle cell anaemia and how it has shaped your perspective on advocacy and awareness?

Growing up as a sickle cell warrior in Nigeria has been tough, still -tough, this condition has made me 10x stronger facing every obstacle as though it is cheesecake, My name is Judith Ojonugwa Matthew, 29 and I hail from Kogi state, I was born in Birin-Kudi in Jigawa state, born to the family of Mr Matthew Otene and Mrs Ngozi Nkemjika. I hail from Ankpa
and I’m Igala by tribe. My siblings in total are 5 and I am the fourth , now third child of my parents, I attended LEA Primary school Lugbe,Abuja and I proceeded to Bishop Delisle College Lokoja for my secondary education after that I gained admission into Kogi State Polytechnic where I studied office technology and management.

What inspired you to become a social influencer and thought leader in the sickle cell anaemia community?

Nigeria has the highest burden if sickle cell births and every year 150,000 babies are born with this disease, having survived a near death surgery in 2019 I knew it was time to take on advocacy, lending my voice as quota to the cause to bring the much needed awareness.

How do you balance being a patient with sickle cell anaemia and advocating for others who are also affected by the disease?

First off, I would say one key thing that has kept me going aside passion is my “resilience & hunger, hunger for a changed narrative, I think i can lend my voice and it will be heard, I believe a global force, when I started advocating actively for this cause in 2019 I was so aggressive and that hunger and zeal hasn’t stopped till date, my sister died from having a complication so I mean why not, balancing advocacy and battling with this chronic illness isn’t easy and it’s a daily struggle but I’m determined.

What are some of the biggest misconceptions about sickle cell anaemia that you aim to dispel through your platform?

The biggest misconceptions about sickle cell is “sickle cell warriors are walking time bomb waiting to explode”. Over the years I’ve heard people call me a weakling, and I’ve battled with workplace stigmas like them saying I’m unfit for the job or role, with my platforms I’ve been able to dispel that myth and misconceptions by constructively showing proof that I’m not a weakling nor a walking time bomb waiting to explode, I’m powerful and enough, I am also the author of @sickleaffirmations an affirmative page for anyone with a chronic illness.

In your opinion, what are the most pressing issues facing individuals with sickle cell anaemia today, and how do you believe they can be addressed?

One of our key goals in the Judith Ojonugwa sickle cell foundation is to ensure warriors and indigent warriors get empowered in skill acquisition, last year we organized free trainings on photography for them this way they learn, get certified and being their own boss, with more support on this, we can do more.

How do you leverage social media and digital platforms to raise awareness and support for sickle cell anaemia research and advocacy efforts?

We believe that technology (social media) has evolve and it is a major tool that we can leverage on to create awareness, we create flyers that we use for our campaigns, we go on media rounds, school outreaches etc some of these are self funded by me and other times we get support from corporate bodies.

Can you discuss any initiatives or projects you’re currently involved in to improve the lives of those affected by sickle cell anaemia?

(i) we are actively involved in the lives of the sickle cell warriors in our support group, their welfare and wellbeing is paramount to us, for those who are out of jobs we train and empower in skill acquisition
(ii) Initiatives like- Know your genotype school tour/ menstrual hygiene (every year we go to Atleast 3 schools in different parts of Nigeria to sensitize school kids on knowing their genotype and teaching girls on menstrual hygiene and safe sex
(iii) Every year in June , June 19th every year is world sickle cell day we organize or partner with other NGO’s in a walkathon
(iii) Free genotype testing outreaches
University campus tours
Christmas celebration outreach

As a patient yourself, what advice do you have for others living with sickle cell anaemia in terms of managing their health and well-being?

As one who lives with sickle cell my advice to others in terms of managing their health and wellbeing is for them to realize that “ society sees your strength before you and they try to make you think it’s a weakness just because you have a chronic illness, don’t listen, be loud, soar. Take your routine medication religiously, be in the right company, have a positive mindset, cultivate a healthy eating habit, pray and do you this is what has worked for me over the years.

Looking to the future, what are your hopes and aspirations for the sickle cell anaemia community, both in terms of medical advancements and societal attitudes?

My Aspirations – In the nearest my NGO (Judith Ojonugwa sickle cell foundation) is looking to own a health center that would be accessible to sickle cell warriors only and on a subsidized rate, doctors who will be employed will also be specially trained in sickle cell management – most doctors lack empathy and know-how in handling sickle cell patients, this reason also pose a challenge as to why sickle cell warriors prefer home treatment to hospitals medications will be readily available, those who suffers from ulcer wounds in any part of their bodies will be treated etc.

(B) Clinical trials and research

As Nigeria has the highest burden of sickle cell rate, these advancements will drastically reduce numbers and together towards an enlightened world.

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