My experience with Lupus is as a parent to a bubbly young woman that was hit hard by the disease but unfortunately lapsed into denial instead of fighting the disease. Lupus is one of those Mercedes killers that take no prisoner,  and one has to be a tough opponent to confront it.  One must learn to fight and guard against depression and denial. Denial and depression are two features of Lupus that are as deadly as the disease itself, but my daughter was not lucky to have learned this message. I was also unprepared at the time, hence did not know how to respond when my daughter went into denial. This remains the worst time of my life. I had imagined that as a former Military man, I was prepared to deal with any situation under the sun, but Lupus was different. My toolkit had nothing to deal with this one. This was a different adversary, very aggressive and merciless. The family threw everything at this disease and hoped to win but this was never to be, as my daughter succumbed in March 2019 after battling the disease since 2017. She was with us for barely a year before she was gone for good. Before being diagnosed with Lupus in 2017, she had been visiting doctors for about two to three years, with all manner of ailments. None of which appeared serious and this information was largely kept to herself.- It is okay, as we have always considered illness as one of those things that come and go after seeing the doctor. Unfortunately, not with this disease, that never goes away,  and its devastation is profound on all family members, both emotionally, spiritually, and financially.

Things have never been the same since we lost our daughter Irene Ochwada Musumba in 2019.

And now as a member of the Lupus Foundation of Africa, I have dedicated myself to being there as a supporter of Lupus Warriors and their parents. I want them to be aware of what I missed as they walk this difficult and painful journey until treatment for the disease is discovered, and awareness shared as widely as possible about this little-known silent killer.