- to make Lupus Visible
By Michael Egiethua
According to the Founder of Arise Monalisa Foundation, Monalisa Chinda-Coker, Lupus is an autoimmune disease which causes the inflammation of many body organs as the body fights its own self. This was contained in her opening address at the 2021 World Lupus Day held at the Transcorp Hilton Hotel Abuja.
The event was put together by Arise Monalisa Foundation in collaboration with Marvel Matrix and had in attendance the Minister of State for FCT, represented by Dr. Ndaeyo Iwot, Acting Executive Secretary, FCT Primary Healthcare Board; the Chief of Defense Staff who was represented by Rear Admiral Jatau Luka, Director of Education and Director of Medical Services at the Defense Headquarters respectively; and many other dignitaries.
Monalisa’s Nollywood team were also fully present to lend their support with the attendance of Segun Arinze, Rekiya Ibrahim Attah, Ejike Asiegbu and Francis Duru. Aham Njoku, a patron of Nollywood was there to lend his support. The celestial realm was represented at the event by Rev. Sam Oye and his wife. Uche Nwosu, former Chief of Staff, Imo state Government House and Gubernatorial candidate in the last Imo election also graced the occasion.
The women were not left out as the Ministry of Women Affairs and the FCT Administration were ably represented respectively. Dr. Jumai Amadu who is a Director at the FCT Administration; FCT Director of Pharmacy Services, Pharmacist Aisha; Programme Manager of the FCT Emergency Maternal and Child Health Services, Dr. Banawa; were all in attendance. NAWOJ President, Ladi Bala; Chief Magistrate of the FCT Magistrate Court, Mabel Bello and Hajia Binta Sahid, Administrator Tinapa Free Trade Zone, were all present to support the Lupus awareness theme of the 2021 World Lupus Day.
Co-MC of the Occasion, Francis Duru, an Alumnus of the University of Port Harcourt, which is the Alumni Association of himself, Monalisa Chinda-Coker, Ejike Asiegbu and many others in the industry. He said they lost a lecturer, the late Amatu Braide to Lupus. He introduced the members of the group of “Nollywood Friends of Monalisa” as follows; Segun Arinze – President Emeritus, Actors Guild of Nigeria; Ejike Asiegbu – President Emeritus, Actors Guild of Nigeria, President Emeritus, University of Port Harcourt Students Union; he described Ejike as a big brother, a friend, an inspiration in the industry whose butterfly effects affects all. He said whenever he is involved, selflessness becomes the watch word and that he is a friend to humanitarian efforts and services. Other members of this group include Francis Duru and sometimes, Desmond Elliot.
Francis Duru said there is a reason that whenever you see members of this group together, it is because of the convener of this project to, “Make Lupus Visible”, Monalisa Chinda-Coker, that they come out. He described her as a friend and sister. He said she has been able to stay within the group because they are men who stand for what women stand for, they stand against what stands against women, they stand for everything that advances women agenda in every ramification. He said they are not afraid and ashamed to be called, “Woman Wrapper”. He said that is why over the decades, you find the recurring decimal of these persons in any project involving Monalisa Chinda-Coker. He said ignorance about Lupus is a course that we must all fight and hence their involvement.
Duru later acknowledged the presence of seasoned Director, writer, producer, friend and brother, Mazi Dickson Iroegbu. Also present was Aham Njoku whom he described as a comrade, Activist, Barrister and friend of the industry.
The second Co-Host, Rita Eghujovbo, told the audience that the Minister of Women Affairs, HE, Dame Pauline K. Tallen was at that moment in her office attending to sympathizers on condolence visits to the Ministry over the death of Barrister Aisha Jummai Al-Hassan, popularly known as Mama Taraba, the former Minister of Women Affairs, who died recently. She said the minister sent an apology. She said also that they were expecting the first Lady of Sokoto State, Hajiya Maryam Mairo Aminu Waziri Tambuwal, if time permits her. Hajiya Tambuwal also lost two friends to Lupus. Rita also acknowledged the presence of the FCT Director of Education Resource Center, Hajiya Suleiman and with her presence, she hoped that, the students in the FCT will get educated about Lupus. She said with this, the “make Lupus visible” campaign will not be one of the projects that are not sustainable, noting that, the more awareness we can create, the better for our society.
Members of the Panelists to do justice to the Panel Discussion – Managing Lupus: Causes, Symptoms, Diagnosis and Treatment were introduced as follows; Dr. Adamu Onu, Garki General Hospital; Dr. Everest Okpara, Everest Diagnostics; Dr. Ayodele Cole, Echolab Radiology and Laboratory Services; Dr. Ejike Orji; Jacqueline Achu, Founder of Jacquie and the Butterfly as well as Hajiya Maryam Aminu Waziri Tambuwal, wife of the Sokoto State Governor. The Moderator was Rekiya Ibrahim Atta, CEO Zomo Media Productions.
Mabel Bello, Chief Magistarte of the FCT Magistrate Court; Mrs Mabel Bello said she was at the event with mixed feelings. Narrating her first encounter with Lupus, she said some months ago, towards the end of 2020, she got a call from her younger sister living in Canada. Her sister said she was having a variety of symptoms and she asked her sister if she had done the Covid-19 test? She said her sister told her, if it were Covid-19, it would have been better. Her sister said that she had been diagnosed with something called “Lupus”. Chief Magistrate Bello said, that was her first encounter with Lupus.
Upon receiving this information, she called her sister the next day, she didn’t pick her calls and by the time she was eventually able to speak with her, she told her that she had been crawling all around the house, she could not stand up and she had to slide on her bum to get from upstairs to downstairs and she had to bath her baby while kneeling down.
It was because of this that she decided to read about Lupus. According to her, most shocking was the fact that it lies latent in a lot of people without knowing. She said in her opinion, this is why programmes like the Arise Monalisa Foundation’s “Arise Against Lupus” with the theme, “Make Lupus Visible”, are extremely important and beneficial to mankind. She said this was more so, especially as we live in an environment that is critically superstitious. Everything looks like it’s “coming from the village”, it’s an “arrow” and because we are so “religious minded and spiritually inclined”, it is not surprising that we think that way. She enjoined every one present and Nigerians in general to look forward to the interactive session that we were going to have with the medical personnel. She said she had a lot of questions to ask and was sure she would get beneficial answers from the panelist.
Rear Admiral J. K. Luka, Director of Education at the Defense Headquarters, representing the Chief of Defense Staff (CDS), General Leo Irabor: Rear Admiral Luka read the goodwill message of General Leo Irabor, Chief of Defense Staff. He said General Irabor was unavoidably absent due to national engagements and therefore sends his apologies. In his speech, the CDS said he was indeed delighted that the Arise Monalisa Foundation was using the global event to draw global and national focus to the debilitating impact of Lupus. He said, the 2021 World Lupus Day theme, “Make Lupus Visible”, is considered very apt and timely in view of the multi-faceted challenges facing the nation.
General Irabor said, the Armed Forces of Nigeria are ever ready collaborators with the Arise Monalisa Foundation in the fight against Lupus in addition to the fight against Covid-19 pandemic, as well as the fight against Terrorism, Banditry, Kidnapping and other related crimes. He said presently, the DHQ considered personnel of the armed forces as the most important assert in achieving her mission of protecting the sovereignty of Nigeria.
To this end, he said the DHQ is committed to strengthening and improving “Adverse Health Outcome” among members of the armed forces of the Federal Republic of Nigeria and Nigerians at large. He said it is in recognition of the important role that healthcare delivery plays in the achievement of the strategic estate of the defense of the nation that the CDS has deemed it necessary to identify and support this health initiative.
On this note, the CDS asserted that, with sustained zeal and enthusiasm by the Arise Monalisa Foundation in the fight against Lupus, in collaboration with the armed forces of Nigeria and other stakeholders, Nigeria will surely overcome this debilitating effects of Lupus.
On the point of support for the “Make Lupus Visible Campaign”, he said the Chief of Defense Staff has approved a handsome amount and asked the sponsors of the programme to get in touch with him for that amount to be delivered to support the initiative.
Finally, Rear Admiral J. K. Luka said the armed forces of the Federal Republic of Nigeria, wishes to join other well meaning Nigerians to arise against Lupus and also to arise against terrorism, insurgency, banditry and kidnapping among other crimes.
Ambassador Sani Saulauwa Bala, represented the former governor of Bauchi State and former Peoples Democratic Party (PDP) Chairman, Alhaji Adamu Muazu also known as the “game changer”. Ambassador Bala said he was former governor Muazu’s Principal Secretary when he was the Chairman of the PDP.
Narrating what happened at the home of Alhaji Adamu Muazu the night before this event, he said that about 25 of them were gathered at Alhaji Muazu’s house and after breaking fast, Muazu mentioned the word Lupus and asked them if they knew what it was? He said it was only him out of the 25 people that had any previous knowledge of the disease. Subsequently, he said Muazu lectured them about the disease.
Bala said he knew about the disease in 2014 when he was Permanent Secretary at the Federal Ministry of Health.
He assured Monalisa that HE, Adamu Muazu has already started the advocacy to “Make Lupus Visible”. He said the night before, he was a living witness when approximately 25 people knew for the first time, the meaning of Lupus. He said he has been asked by Adamu Muazu to inform Monalisa Foundation that he is with them through and through. Muazu said he is willing and committed to partner with Monalisa Foundation in this advocacy and in other advocacies that her organisation is involved in the future.
For a start, Amb. Bala said he had been asked by Muazu, who he described as his boss, to announce to the Arise Monalisa Foundation that, he will give a personal cash donation of One Million Naira (N1, 000, 000). Also, he said Muazu’s support as the “game changer” will be limitless. He said he knows that once Muazu is committed to something, there is no going back.
Many of the participants and guests in attendance had never heard of Lupus before this event, including this writer who, days before had to look it up on google for a first-time knowledge. This can be said to be the same for a very large number of Nigerians!
WHAT IS LUPUS?
Jacqueline Achu, suffered Lupus for 2 years without knowing, she was sick for 2 years and was not able to determine the cause. At some point she was told she had 3 days to live which left her with no choice but to start planning her own funeral in the UK. Jacqueline has experienced all these and has survived it for 18 years to tell her story and use it as an inspiration to help others. There couldn’t be a better person to tell us about a first-hand experience of Lupus.
According to Jacqueline Achu in a documentary previewed during the 2021 World Lupus Day, May 10th, she said she has lived with Lupus for the past 18 years. She was married to a man she loved but got subjected to domestic violence. She said in August, 2003, one week after she had her son, her last child, her husband had abused her physically, three times. The last one he hit her back, her waist and her womb lapsed, that was four days after she had her child. Two weeks later, she began to experience things in her body.
She couldn’t hold herself, remember things or recognize her children, she became ill, feeling sore throat, mouth ulcer, body aches, exhaustion. She was having high fever, feeling weak and she began to lose a lot of body weight. She said she was usually size 12 but because she had a baby she was size 14 and within 2 weeks she went to size 6. She began to notice black spots on her face, arms and body. She started to lose strength and was having migraine. She said you don’t sleep because you’re in constant pains, you have insomnia. She started to have out of body experience and learnt Body over matter to help her cope with the pains. She said her type of Lupus, Systemic Lupus is hereditary.
Jacqueline said any time she saw her Doctor, he would say to her, ‘you know you just delivered a baby and your body has gone through abuse, just relax, your body will get back itself’. She said her condition only got worse till she could not get up from her bed again.
She became bedridden and crippled for 2 years as it were, she couldn’t move! By the time she was in so much pain and the doctors began to give her pain killers, morphine, Steroids, Tramadol, Naprosyn, etc., to help calm the pains, the reverse effect was that she began to add weight. Jacqueline said it took 2 years for doctors in the UK to diagnose her ailment to be Lupus, she had done sickle cell test, Malaria, Typhoid, HIV and indeed all types of tests of ailments that affect the black man and considered tropical diseases.
Monalisa Chinda-Coker: Monalisa Chinda-Coker is the founder of the Arise Monalisa Foundation. First, she expressed her hunour and privilege to have this event come through and of her foundation being able to contribute their quota to the betterment of our society. She was particularly grateful to her team at Monalisa Foundation, the Marvel Matrix Team – (the event planners) and Triad. She also thanked all the individuals and organisations that supported in one way or the other. She said this was the first time she would be championing first hand, the fight against an autoimmune disease even though she has been involved with issues relating to health and well-being, especially relating to the less privileged.
She said Lupus, just like other diseases leaves sufferers and care-givers alike with a sense of helplessness whenever they are confronted, so you can imagine their state of mind when they know the disease they are dealing with has no cure, and the body that should spearhead the healing, has turned against itself. She said, such is the reality of autoimmune disease, of which Lupus is one.
Monalisa said she came face to face with the disease and was able to understand it when her friend and sister, Jacqueline Achu, finally found out that what had left her bedridden for 2 years was Lupus. She said watching Jacqueline battle with Lupus was all the motivation she needed to embark on this journey to bring the spotlight on the disease, which is no doubt affecting many and silently killing them. She noted that from her knowledge so far on Lupus, when the crisis comes, it affects major organs and parts of the body such as joints, kidneys, the brain and so on. These isolated manifestations make sufferers take treatment for the specific part that is currently ailing which she now understands can cause complications for other organs in the body.
This is what has led her to organize a forum like this, “where we can have a conversation on how to understand Lupus, diagnose it and manage it”, she said. It was her believe that a major pointer to whether a sufferer wins the fight against Lupus is the speed of detection, noting that the longer it takes before the disease is found out, the more damage that the patient has to deal with, which by extension, largely determines if they live or not. Monalisa said the conversation will not just stop there, but that she and her team would be looking at having periodic enlightening messages on signs that the populace should look out for in themselves and their loved ones to determine the onset of a Lupus manifestation. This, she said was necessary to lead the path towards data gathering and database creation and countering the tendency of blaming unexplained illnesses on “home trouble”.
She said another reason for this data gathering is that the data and the people who come forward with their different symptoms and exposure can inspire medical research for this disease and many others that may breakout as the environmental conditions keep changing.
She expressed her gratitude to diagnostic centres that are collaborating with the Arise Monalisa Foundation to administer tests to willing participants at a discount. She hoped that more centres would open up their facilities to offer the different tests that are needed.
In the documentary previewed at the event, Chief (Sir) Dr. Joey Azinge, Consultant Physician, Consultant Virologist and Immunologist and Chief Medical Director, Bethsaida Medical Consultants, Abuja, said a vast majority of Nigerians are used to Malaria and Typhoid infections amongst others but have little or no knowledge of Lupus. He said Systemic Lupus Erythematosis (SLE) is a massive Inflammatory disease that so many Africans suffer from but which only very few of them are aware they have this nosological unit in their system. He said it is a shame because many people are dying and many others have gone to their graves without particularly knowing what killed them. They may have resorted to spiritual causes, etc. He said most times, you will hear the patients tell you, “Doctor, I just had a laboratory establish a working diagnosis of Malaria and Typhoid”.
Dr. Azinge noted that the rate at which Typhoid and Malaria diagnosis are hitting our space is indeed very alarming. He said, “why not, if not? It could be other problems, one of which is Lupus”. What then is Lupus?: Systemic Lupus Erythematosis (SLE) is an inflammatory massive disorder caused by the immune system of the person. The immunological system of the individual goes haywire and begins to ravage the immune system of the person that is suffering from the ailment. The immune system that is supposed to give us protective cover turns against us in the case of Lupus where we see an immunological reaction.
The address of the FCT Minister of State Dr. Ramatu Aliyu, was presented by Dr. Ndaeyo Iwot, Acting Executive Secretary, FCT Primary Healthcare Board. The highlights of the address are as follows; The FCT Minister of State considered it a huge honour to be part of the event marking the 2021 World Lupus Day organized by the Arise Monalisa Foundation. She said it was disheartening to know that Lupus is a chronic autoimmune disease affecting approximately five million people globally. The Minister said she was aware that since 2004, Lupus organisations around the globe have conducted activities on May 10 to raise awareness and educate the public about the symptoms and health effects of this common but often overlooked disease.
The Minister noted that, the singular fact that Lupus is one of the most severe co-morbidities and can lead to end stage kidney disease and kidney failure makes it scarier. She said leaving with Lupus therefore, is quite challenging for all patients because patients with Lupus have to make significant lifestyle changes to manage the disease. She said, scientifically, there was no known cure for Lupus. The treatments that are available focus on suppressing the immune system, managing symptoms and reducing the severity of co-morbidities.
The minister noted that, in view of the complexities associated with this silent killer disease, public awareness and the impact it has on the lives of those who are affected must be scaled up. Referring to a 2018 global opinion survey, she noted that 51 percent of respondents did not know that Lupus is a disease. Some of the respondents who knew Lupus was a disease, believed erroneously that, it was contagious. She said no doubt, a misunderstanding like this can lead to unnecessary stigma for patients with Lupus. It was therefore her sincere hope that “Patient Support Groups” play a critical role in enabling patients with Lupus connect with each other, helping them to share daily experiences of managing their conditions, handling potential stigmatization and reducing the social isolation that can accompany the disease.
She said the medical difficulties associated with diagnosing and treating a poorly understood disease has negative impact on those with Lupus. The minister said the World Lupus Day is meant to tackle some of these problems by aiding patients’ support groups, raising public awareness and increasing the number and availability of the sources devoted to supporting and managing patients with Lupus. She therefore, urged all critical stakeholders to make Lupus Visible in tune with this year’s theme and use every available medium to reveal the many faces of Lupus and its impact on patients. She said the first step begins with education and knowledge which can be powerful tools that can defeat Lupus or any existential challenges.
The Minister said, the FCT Administration is poised to support any group or organization whose aim is to bring an end to the devastating impact of Lupus. She said the administration will continue to do its best in securing a better quality of life for all people with Lupus and other related diseases.
In the one-minute goodwill messages by stakeholders, Monalisa’s Nollywood friends and supporters of her humanitarian efforts had this to say:
Segun Arinze said he was most impressed by Monalisa’s humanitarian works. He said in the industry, she is one of its shining lights and that apart from her professional calling, she has been one of very few who pursue things like this, which create value for humanity rather than chase things that are mundane. He said when Monalisa told him about Lupus, he had to go and read it up and he was amazed about the things he found out. He commended Jacqueline Achu for coming out to bring about this awareness campaign and prayed that she lives long to tell her story.
Ejike Asiegbu, first and foremost, wished all the women in the house, a very happy Mother’s Day and emphasized the need to appreciate women for their resilience, strength and character. He said if for nothing else, we should respect women for not just being our wives but also as our mothers. He said for the campaign to “Make Lupus Visible”, he was already in on it and that he will make sure that this message of “making Lupus visible” will get to the nooks and crannies of Nigeria.
Singing the first verse of Louis Amstrong’s “Nobody Knows the Trouble I’ve Seen (1966) hit song, he referenced Jacqueline Achu that the song translates to the inert powers of women and that we must recognize that and appreciate women. He admonished all men and husbands to better men and husbands. Furthermore, he said men should learn to listen and get closer to their wives. He said sometimes women can be erratic, but that in that erraticness, there are things and messages they want to pass. He said Jacqueline’s experience is just one of the experiences of what women go through under the circumstances of Lupus. Over 80% of Lupus cases are women.
To Monalisa Chinda-Coker, Ejike said he had known her for a long time like a daughter, she was his junior at the University of Port Harcourt. He said she has always had this burning desire to make a change in her environment, to bring about positive change and that she has not changed over the years. He said she has scaled the target and mark and she is a living example of one who is not in competition with any of her colleagues in the industry. He assured her that what she was doing with Phil Okoroafor (Md/CEO) of Matrix Marvel has notched her further in the sands of time. He also thanked Monalisa’s husband, whom he described as his friend, for giving her the space and time to manifest all the good deposited in her that she so eagerly wants to give out to the world.
Others who gave goodwill messages are Rekiya Ibrahim Attah, Francis Duru (who recalled that their lecturer at the University of Port Harcourt, Amatu Braid died of Lupus) , Mabel Bello and many others.
In her own closing remarks, Mrs. Phil Okoroafor, the Managing Director and CEO of Marvel Matrix Plus Limited, said her company has teamed up with Arise Monalisa Foundation to advocate against a seemingly unknown fatal disease called LUPUS as the world marked the World Lupus Day today, May 10, 2021. She said her team has brought its over 25 years of experience to design the look, feel and the narrative for this introductory conversation on the disease as well as the narrative for future conversations that will bring about the change that is truly being sought.
Earlier, as part of activities planned to mark the event, a 2km Sensitisation Walk around the Unity Fountain Abuja took place on Saturday, May 8, 2021 from 7:00am.