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admin By Oyebola Owolabi
The Lupus Remedies Global Support Foundation (LUREG) has advocated greater government intervention and awareness to help Lupus carriers live normal lives.
Lupus is an auto-immune condition where the body fights itself, thereby damaging all organs of the body. According to statistics, about 90 per cent of people with lupus are women.
Chairman of Lureg, Idowu Sanusi, said government needs to get more involved in spreading awareness about lupus because it is an expensive disease to manage.
Sanusi spoke at the October Independence Lupus Awareness and Endowment Programme, themed ‘Harmony in Wellness: Embracing Freedom through Health and Support’.
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 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 it is Lupus at 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 warriors to see their pain as progress, and develop a limitless mindset.
Director of Lureg and a warrior, Fauzat Sanusi, said she decided on the advocacy to sensitise 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. There are no avenues to test 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 others do, else we 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 warriors can be cared for, just like people living with other conditions.
“Research institutions should also do more on Lupus because it has so may precautions that people don’t know about because it it’s 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.
“Lupus is very expensive to diagnose and it keeps the warriors spending. It will however bee 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, Mrs. Mounfiq 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 their illness, and 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 for 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 and give them visibility. Government should advocate policies to ease access to healthcare. There should be medication. They also need job security to ensure they remain employed when they return from a long bout of crisis,” she added.
