By Lukman Olabiyi
In Nigeria, where diseases like malaria, diabetes and stroke dominate public health discourse, a lesser known but equally dangerous condition quietly persists. Known as lupus, it is a chronic autoimmune disease that affects millions worldwide but remains largely overlooked.
For most Nigerians, the name ‘lupus’ doesn’t carry the same weight or urgency as more familiar health threats.
Malaria, a disease endemic to the region, and rising concerns over conditions like diabetes and hypertension often take centre stage in clinics and public health campaigns, making them seem more immediate and tangible.
In contrast, lupus, often referred to as the “silent killer,” goes largely unnoticed.
This insidious condition occurs when the body’s immune system mistakenly attacks its own tissues and organs, leading to inflammation and damage.
It can affect the skin, joints, kidneys, heart, lungs and brain, and its symptoms are often mistaken for those of more common, less serious diseases.
As a result, early diagnosis can be challenging, and delayed treatment can lead to severe complications.
Lupus doesn’t announce itself with obvious, dramatic signs. It often begins with subtle symptoms like fatigue, joint pain, or a rash on the face; symptoms that are easily attributed to other causes.
Without proper awareness or knowledge, many Nigerians living with lupus go undiagnosed for years, unaware that the disease is slowly harming their vital organs.
Actress Kemi Afolabi is one of the few high-profile individuals in Nigeria to raise awareness about lupus.
Her brave decision to publicly share her diagnosis stunned many and brought much-needed attention to a disease that is still largely misunderstood.
In March 2022, the actress opened up about her battle with lupus during an emotional interview.
Tearfully, she revealed that doctors had told her she had just five years to live of which she had already lived one year.
Despite the global prevalence of lupus, awareness in Nigeria remains minimal, overshadowed by more familiar health concerns.
Many Nigerians, including healthcare professionals, struggle to recognize its symptoms, leading to frequent misdiagnoses and delayed treatment.
However, Lupus Remedies Global Support Foundation (LUREG) has been at the forefront of advocating for increased government intervention and public awareness to help those living with lupus manage the disease effectively.
Idowu Sanusi, chairman of LUREG, recently emphasized the importance of government involvement in spreading awareness, highlighting the financial burden of managing lupus.
Sanusi made these remarks during the Independence Lupus Awareness and Endowment Programme, an event themed “Harmony in Wellness: Embracing Freedom through Health and Support,” aimed at fostering greater awareness and support for those living with lupus in Nigeria.
Speaking on the disease, he said: “From detection, to testing and medication, lupus is not cheap to manage. The testing is not even done in Nigeria, the blood sample has to be sent to South Africa, Germany or Turkey, and it takes about 10 days or two weeks for the results to come back.
“Also, we need the government to intervene in the area of enlightenment and advocacy. A lot of people don’t even know there is a disease like lupus. Many people continue to treat malaria unending, and will only get to know they have lupus when it gets to the chronic stage.
“Early detection is, therefore, a great challenge to managing this disease. So we urge the government to get involved because everything about lupus is expensive.
“We especially urge the Lagos State Health Insurance Management Agency (LASHMA) to build up its policies to cover lupus warriors so they can access treatment whenever the need arises.”
Sanusi also admonished lupus warriors to see their pain as progress, and instead develop a limitless mindset from their pain.
Director of LUREG and a warrior, Fauzat Sanusi, said she decided on the advocacy to sensitise the people on the need to check themselves regularly, especially in cases of prolonged illness without cure.
She said: “LUREG supports people living with lupus. Being a lupus warrior myself, I realised that not many Nigerians know about it. Lupus takes away a lot from the body system; it can cause blindness and paralysis.
“So this advocacy programme is to tell the world that lupus is real, and people live with it. The challenge, however, is detection; because there are no avenues to test it in Nigeria, so many people don’t know they have it.
“I suffered about 10 years of wrong diagnosis until I got a breakthrough. Now I am in my third year of survival, and I want to share my survival techniques with others like me so they can also live fulfilled lives.
“Living with lupus is actually more difficult for women because of our hormonal system. We can’t take medications or vaccines the way other people do, or land in trouble. Mine was the outcome of family planning.
“That is why advocacy is important in lupus. A lot of people don’t know about it, so we need to take the awareness to the stage whereby the lupus warriors can be cared for, just like people living with other conditions like diabetes, hypertension and even sickle cell.
“Research institutions should focus on investigation and research into this disease because it has so many precautions but people don’t know about it because it is a relatively scarce condition.
“If lupus is attended to, blindness will reduce, kidney issues will reduce, and a lot of other diseases will reduce. Lupus is actually the foundation of many other diseases, but because lupus is not diagnosed, the situation worsens. So we need to focus on advocacy and support for lupus warriors.
“Lupus is very expensive to diagnose and it keeps the warriors spending. It will be better when there is insurance or a platform to leverage on to get medications, mental health support, and others.”
Mrs. Sanusi admonished other women: “Lupus is not a death sentence. If properly addressed, we can live normal lives. Lupus is manageable with medication. You also must be busy with something, avoid negative engagements because it is depressing, but with positive attitude and living well, life will be better.”
The keynote speaker at the event, Mrs. Monfuq Abu, admonished participants to not allow pain limit them. She said: “Being someone who has experienced multiple situations of grief and pain, among others, I realise we shouldn’t allow physical pain to break us down to the point of mental and emotional pain.
“That is why I am urging these people to have high tolerance for the physical pain resulting from illness, but have zero tolerance for mental, emotional and psychological pain because the mind is a machine, and you can use it to think the kind of thoughts that you want to bring into your life.
“If they allow thoughts of pain, torment and hardship, it incapacitates them mentally, emotionally and they become victims. But here they call themselves lupus warriors. In order for them to actually be warriors and show up as warriors in the world, they need to live in a way that they can power through the pain.
“I believe that human beings are built to endure a lot of things, so we shouldn’t allow ourselves break down because of illness.”
Mrs. Abu also advocated greater support, especially funding, to create more awareness for lupus and ensure warriors get adequate treatment and care.
“I believe communities and organisations like this should be encouraged. Lupus is a life illness because there is no cure; warriors live with it throughout their lifetime. It’s a silent disability which eats into finances.
“So I call on governments, charity organisations and well-meaning individuals to support them, give them visibility to express themselves. Government should advocate policies to ease their life and access to healthcare. There should be subsidies and subvention on their healthcare. They also need job security to ensure they remain employed when they return from a long bout of crisis,” she added.
Living with lupus often requires a multi-faceted approach to manage symptoms. Regular medical check-ups, a balanced diet, and gentle exercise are crucial. Many patients also find support through lupus organizations like LUREG, where they connect with others facing similar struggles.
Therapists and support groups can also provide invaluable assistance.