PENINAH NANTUME NAMIREMBE is a 30-year-old journalist, MC, lupus warrior, and lover of Christ. Quick Talk caught up with her recently to talk about this rare disease that battered her in her twenties, and more.
Who is Pennie?
Pennie is a short form of my name, Peninah Nantume Namirembe. I am 30, female and a journalist under BBS Terefayina. I have now added to that, corporate events emceeing, I am a lupus warrior, lover of Christ and her mother’s daughter.
Well, nice to meet you.
Nice to meet you too, Quick Talk.
When you talk about being a lupus warrior, what do you mean?
I feel like that, having fought and won lupus; it might have not been an easy fight, but I am sure me and lupus are on a 1:1 draw. It is not easy to get into remission given the health facilities in Uganda.
[In case you were wondering, lupus is a chronic autoimmune disease where one’s immune system attacks healthy tissues and organs by mistake. It causes widespread inflammation that can damage the joints, skin, kidneys, heart, lungs, and brain, according to Google.]
Good to know you are winning; when did you know you have lupus?
I fell sick way before my diagnosis, but the proper diagnosis was between 2019 and 2020.
And you are currently in remission?
Yes. Remission means that situation where the disease sleeps and I am no longer using the medicine anymore.
Wow. What were the signs and symptoms like?
Pain all over, but most especially joint pain, muscle pain, skin rash on my face and upper body, fevers and very bad infections.
How long did it take for the doctors to know that it was lupus? Laba omwana ono! [Now look at this one!] About two years of pain! [Lupus, while more prevalent in North America and not common in Africa, it still affects more women of colour – African and Asian decent – than any other demographic.]
Oh dear, it might have been so confusing for you to treat what they can’t figure out?
Most doctors said I was just tired and needed to sleep, that the pain is just in my head, and others gave me antibiotics.
Is there a special treatment for lupus?
Not really, because with lupus it’s your immunity fighting you; all they do is to put it to sleep. This can be done with immune suppressants.
That must have been so hard for you; didn’t your friends isolate you because of the disease?
[Giggles] A few saw me. But yes, stigma is one of the issues we face, because people think we are contagious.
Wasn’t it too hard for you to show up at work with this Ugandan employment?
It was so hard, that’s all I can say. I got a lot of medication and started to become resistant to some, but now that I had got a doctor who had identified my problem, we later got the medicine that would work for me; however, I reacted to some medicines because we all have different bodies and different blood groups.
Is lupus a general disease that anyone can have, or does it attack people with a specific immune system?
Yes, it can attack anyone, but most especially women. Most symptoms are the same; however, there are different autoimmune diseases because even lupus itself has types.
How did you feel, since you were a youth battling a disease? Didn’t it depress you, seeing your fellow youths living a normal life?
I got depressed and suicidal to the point that I lost myself.
Is there a specific home or hospital for lupus in Uganda?
No, however, it’s only rheumatologists and hematologists that can help.
Is there a specific diet?
Diet almost killed me. I personally am allergic to some food.
Apart from the lupus side, who is Pennie?
I don’t really have a definition; as long as I am not in pain, I just live [laughs].
What do you love doing?
Living without pain, having a peaceful sleep and being able to run a normal day like anyone else.
What is your favourite colour, Pennie?
Purple.
What is your marital status?
Men are bad people.
Yiyii banange… why say that about the Lord’s creatures?
I swear; they can hurt you till your last breath.
And what is your favourite dish?
I love posho, rice and groundnuts.
What is your favourite hobby?
Sleeping.
Any advice for someone that is in a state you were once in?
Relax, my love. Chill the outside world; you might think you are in this alone, but it eventually comes to an end. Pray and also give doctors a chance.
What pisses you off?
Failure for people to understand that sometimes we don’t look sick but actually are in pain. Depressive episodes and anxiety still challenge me the most.
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