In 2014, the age of twenty-four, I got diagnosed with SLE – Systemic Lupus Erythematosus; which is simply known as lupus. I struggled physically and emotionally because lupus was not only foreign here in Nigeria, there was no support group or foundation to help me through the transition process. After coming to terms with the diagnosis, with the words of Toni Morrison echoing in my head, I started looking for a way to help other people like me through the emotional rollercoaster often associated with the diagnosis. In October of 2017, I shared my success story on Bellanaija.com (one of the biggest web magazines in Africa). The responses were overwhelming as I got to hear stories from other lupus warriors. That article was the birth of The Lupus Refuge Foundation(TLRF).
The Lupus Refuge Foundation at its very core is a haven for lupus warriors with a goal of bridging the gap between Lupus patients, rheumatologists, other healthcare providers and the government. This kind of massive commitment needs committed and highly driven people to really make a difference. An exceptional team of trustees, advisory board members and a working management team of tried and trusted professionals and lupus warriors are on board to create a massive impact.
We know things would get difficult. We know we are going to have to fight systems and structures. We are expecting to get doors shut in our faces. We are going to meet lupus warriors who would refuse our help. We understand we are up against a culture of silence and secrecy where health conditions go to die. But we refuse to be deterred by that. We are determined to put in the work and patient enough to wait for results.We are encouraged by the level of impact we would be making in the lives of warriors, their families, and the healthcare sector. So we refuse to be weighed down by the obvious limitations, we march on as an army going to battle. We will win this.
We are doing what Toni Morrison said here at TLRF, we are writing that book that hasn’t been written yet. We are redefining what living with lupus looks like in Africa and we are saying Yes!. Yes to lupus warriors living their true and authentic lives. Guess what team is going to be at the forefront breaking boundaries and creating massive impact? Yes! this team!
This lupus will not define me or cripple me.