‘People should be aware of need for genetic testing’

This August, Mrs. Esther Owute Pepple Onolememen, an Irish of Nigerian origin, Founder, Sickle Cell Society, Ireland, President, Pan European sickle Cell Alliance (PESCA) and Founder, Sickle Cell Awareness initiative Ireland and Nigeria (SCAIIN) was here to launch #Sickle Cell Matters campaign, which is a replica of what she has been doing globally, as a call that world governments, especially authorities in Nigeria, address the disorder. She launched the campaign in Lagos, Port Harcourt and Abuja from August 16 to 21.

#Sickle Cell Matters, she says, is aimed at breaking the stigma attached to the disorder, which has robbed people living with the condition of access to healthcare, family support, medical advancement and resources. As people with the disorder don’t want to be labelled, they keep their pain to themselves, and this not sharing their burdens has led to ignorance and death of many children.

This was the situation before she came with a mother’s painful experience and decided to make a change. Backed with her findings that though medical research was actively engaged in the issue, she, however, discovered they were only looking in one direction.

Through her study, she found that psycho-social issues surrounded the disorder, and not only are they not helping the people, but they also make support difficult, because those who should give it were more ignorant and so, overwhelmed.

Her personal experience began in Nigeria, where she got married. She knew she carried the AS gene, but her husband was misdiagnosed to be AA. Their first child, a boy, was AA. The second child, a girl, was misdiagnosed as having the AS. But she was often ill and at the age of eight months became so ill as to be left with a partial paralysis.

So, they sought treatment locally and abroad. After they moved to Ireland, theirs was one of the first African families to draw the authorities’ attention to the disorder.

“The healthcare professionals felt I had come with a burden, which required attention,” she recollects.

Esther confesses to have had little or no knowledge about it then. She attended University College, Dublin for a Post Graduate Diploma, after which she went to Trinity College, Dublin to get a Master’s degree in Social Work. And that was where it all began. She had to undertake a research, which examined the experiences of families living with children with the disorder in Ireland.

“The study was ground breaking, not only in Ireland, but across Europe and globally, because it was the first of its kind,” she says.

She has since been making presentations at conferences across the world. She has been invited to speak at a conference organised by the Centre for Diseases and Control, Atlanta in the U.S. The research findings of her doctoral studies were equally well received, because others had examined the clinical aspect. Esther has a recommendation to do a doctoral study on Cultural and Health Implication in People with Sickle Cell.

“My research stands out, because it broadly identifies a lot of issues, such as lack of support for families, inadequate resources or medical advancement concerning the issue,” she explains. “Stigma is a big issue, and because of it, people do not admit they have relatives, who have the disease. The case of children is even worse, as they are thought to be possessed. Sometimes, the mother is blamed and because medicine had not been able to accommodate the problem, the children died.

“I resolved to break the stigma, because when about 10 of us parents met in clinics at Ireland, we would not discuss with each other, we just stared into space,” she recalls. “I began to make the difference, not only because I have a child, who has been on life support, but because I have the intellectual capacity and knowledge. We have, therefore, come up with a strategy to break the stigma because we realise that it can divide a family.”

Stigma is a home breaker, she says, because of the secrecy involved. A wife does not want to tell her mother in case she tells another member of the family, who then shares it with another person. A husband may be reluctant to tell a cousin.

“In such situation, the child is denied support. My study shows that families have crumbled because of the crises and cost of treatment, which burden a family down. I have witnessed that personally, because I took time off college to take care of my sick child, but luckily, we are an enlightened and understanding family.

“We educate people on the need to raise awareness and genetic testing. We educate young people to take care of themselves, especially at that critical period of transition from childhood to teenage.

“#Sickle Cell Matters is a global movement. Many countries of the world have shown interest. It encompasses all aspects of advocacy, for governments to pay attention to screening, treatment and education. What is the health plan for Nigeria? I want us to discuss, because a healthy nation is a wealthy one.”

According to her, the commonest genetic disorder in the world is the sickle cell, which affects about five per cent of the global population. Of these five per cent, Africa has 2.5 per cent. Among Africans, Nigeria has the highest number, with about 40 million people that are full blown or carriers of the disorder.

“Current statistics has it that between 100, 000 and 250, 000 are born yearly in Nigeria with the disorder or carry the trait,” she explains. “In Ireland, about 400 children with the disorder are of African origin. I have four children: two have the disorder, while two are AA. I have spent 16 years in advocacy for sickle cell care.

In Europe, we have a huge support and have made landmark achievements.”

These achievements, she says, include addressing the Irish House of Parliament. Presently, she gives special lectures at colleges. She is in partnership with the Royal College of Surgeons in Ireland, to give a yearly symposium to trainee doctors on social issues, affecting people with sickle cell disorder.

Some organisations in Nigeria have also expressed the wish to work with the Sickle Cell Society, Ireland and PESCA, as the launch of the campaign has put things in perspective.

“The statistics are still high,” she says. “People in the rural areas do not have access to treatment. There are people, who still do not know their genotype.”

Speaking about SCAIIN, the umbrella organisation with which to address the issue in Nigeria, Onolememen said it is the first international sickle cell organization that would operate from both Ireland and Nigeria.

“SCAIIN has partnership with reputable organisations and experts from Europe, UK, Canada and US, whose experience would benefit Nigeria,” she explains. “They rely on research and development, health provider education and training programmes. SCAIIN is dedicated to the promotion of public awareness programme, which would educate religious bodies, healthcare providers and relevant organisations to send the message that sickle cell disorder is not a death sentence.

“We come with expertise. We are research based, and we add facts to experience, which make our services rich. We are open to other organisations, because there is need to speak in one voice. A Nigeria as President of PESCA is a big voice for Nigeria to tap into. Another opportunity for Nigeria is a conference, which holds at the European Parliament this October.”

Esther is your typical beauty from Port Harcourt. She is light complexioned; her quiet appearance would make you wonder how she has managed to do all these. And then you see her photographs, while addressing the European Parliament. Then you see Reme, her 16-year-old daughter, as she lies on a hospital bed connected to tubes. “People are usually surprised and when they ask me, I tell them we all have our buttons; press my button on sickle cell and I can talk nonstop.

“I am busy and always planning. We have a lot of events. One of them is called the Colours of Sickle Cell. We hold such events as fashion shows, football, drama and music, which bring people together. Everybody is included— people with the disorder know they are accepted and can live well, irrespective of the disorder. They are not ashamed anymore to say that they have sickle cell.

“We have various strategies to build awareness, and we use community approaches. #Sickle Cell Matters looks at improved treatment and getting a sickle cell register, which would make planning possible.”

Esther is married to Barrister Philips Onolememen. “He is supportive, which has made it possible for me. The whole community supports me, and even my children.

On caring for two children who have the disorder, she says: “With what my children have gone through, I would say that Ireland has the best healthcare system in the world. For the past two years, my older daughter has been ill, she just left the intensive care unit. At a stage, she had organ failure; the spleen was taken out, the white blood cells were destroyed and the muscles were not functioning

“I stood by my faith, when things looked bleak. It has been a rough patch. Currently, she has a tube connected to the heart, as well as a weekly check-up.

“When I realised I had two children with sickle cell, I had two choices. It was either I sat down and cried and wallowed in self-pity. But I chose to use my voice of pain to make a change. As my daughter is stabilising, I took time off to see how I could bring the knowledge to Nigeria.

“People are surprised at my data, but when you have a data, you can solve the problem. However, the question is: Is Nigeria ready? The issue needs to be addressed now, so that the youths would be healthy enough to make a wealthy nation.”

Her efforts have earned her several awards, which include the Sheroes Award 100 Most Inspiring Woman in 2015; Africa Day Award for setting up the first ever sickle cell youth organisation in 2014. She was nominee for the Most Outstanding Mother of the Year, among others.