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Chronic Illness Disability

The Future Of Health Care Tech In Africa

Chronic illness and disability are on the rise in Africa. Luckily, so are clever African entrepreneurs, who are hacking the local health care system in revolutionary ways.

Africa confronts the world’s most dramatic public health crisis. Between countries battling with HIV/AIDS, malaria, high rates of maternal and newborn mortality as well as increasing rates of noncommunicable diseases health systems are straining.

But healthcare tech entrepreneurs are working across the continent to create solutions for the issues their communities face, and often innovative apps or accessible electronic equipment are working to lessen the burdens healthcare providers face, or provide access where it might not be otherwise. While the problems each country face might differ the solutions are innovative, often leapfrogging the stages a developed country’s healthcare might go through.

A couple technicians from Red Bird Health Tech.

The Power of the Pharmacy

In Ghana, West Africa, Andrew Quao and his team have been working on helping to lessen the burden on hospitals and clinics by getting pharmacies to do health monitoring tests.

As it stands, Quao, co-founder of Red Bird Health Tech says people could lose three hours to a full day waiting in a public hospital to be tested for tropical diseases like malaria, or to get their blood pressure, blood sugar or cholesterol checked. The company supports pharmacies in the capital Accra and further along the coast in Takoradi by offering rapid diagnostic tests, staff training and technical support,essentially turning pharmacies into mini-clinics. They can offer tests in five to ten minutes a patient might wait hours for in an overcrowded hospital.

When you think of Africa, everyone thinks of malaria or infectious disease, but the truth of the matter is that we are having an epidemic of chronic diseases that is growing.

“When you think of Africa, everyone thinks of malaria or infectious disease, but the truth of the matter is that we are having an epidemic of chronic diseases that is growing,” Quao says. “You need constant interface with the healthcare system in monitoring them. The hospitals are so burdened and the healthcare system is chocked. People are spending endless productive hours to just get on top of their healthcare.”

Quao and his team hope their growing service will save users time and money and lessen the burden on Ghana’s healthcare system,which he says is “punching above its weight.”

“We have systems that are set up to treat 100 people but they are having to treat 1000. It’s difficult to get some level of quality especially for the public health sector.”

They hope that by offering testing services in pharmacies, people will just go to hospital for more serious issues or treatments, rather than the health monitoring.

Solving The Drug Price Problem

Also working in the pharmacy space is Ghanaian Gregory Rockson—who created mPharma, which gives patients access to prescription drugs at an affordable price. The company has partnered with major pharmaceutical manufacturers, insurance companies, financial institutions and governments to deliver medicines directly into the hands of consumers in a handful of African markets. It connects patients, hospitals and pharmacies to cloud-based software, so doctors know where to get medicines needed.

Rockson says Africa continues to have some of the highest drug prices in the world.

“In Kenya, intermediaries’ margins account for an excessively high 50 percent of a pharma product’s final price, whereas the average in OECD countries varies between 2 to 24 percent of the final price. We built mPharma to create new business models that would enable more patients to have access to the medicines they need at an affordable price.”

“What Africa needs is more physical healthcare infrastructure and human capital.”

So far, mPharma manages a network of over 220 pharmacies and serve 40,000 patients each month and patients pay between 20-30 percent less for their medicines in selected mPharma partner pharmacies.

While Rockson wants to see mPharma become the largest healthcare company and brand in Africa, he says there are a number of challenges within the heath tech landscape in Africa that need to be addressed.

“What Africa needs is more physical healthcare infrastructure and human capital. Once we have this, we can build technology enabled products and services to bring more efficiencies and drive down costs.”

The founders behind Yapili

Is Telemedicine The Answer To Africa’s Mental Health Epidemic?

Mobile phones are ubiquitous in Africa,with an estimated three mobile phones for every four people in sub-Saharan Africa. A report in The Lancet says the widespread of phone and internet connectivity allows for leapfrogging opportunities in Africa by adopting more advanced technologies rather than following slow, classic paths to address health workforce constraints and improve people’s access to quality health services, with innovation as key in developing new services, ways of working and creating technologies to achieve improved health, including training healthcare workers though online courses.

It is through mobile phones that Yapili hopes to link users through the continent with healthcare professionals, near and far without having to step foot in a clinic or hospital.

Co-founder Enya Seguin and market lead Rorisang Mokgwathise are part of a team spread over seven countries working on the service that delivers healthcare and advice to those in eight African countries through an app. Users can connect to local and western health professionals in societies where professional health advice is hard and expensive to get. YAPILI connects users to professionals who can answer questions around pregnancy and family planning, diabetes and hypertension, HIV and sexual health, mental health as well as generic health questions.

“In a lot of African countries there is an alarming rise in depression and suicide. We wanted to focus on [that].”

Users upload their information into the app, creating a profile and then the reason why they want to speak to a healthcare professional. The app then suggests professionals the user can speak to, trying to match someone in the same country if possible.

The idea was born in Rwanda in 2014 and is now available to more than 1200 users in Kenya, Botswana, Nigeria, Tanzania, Uganda, Rwanda and South Africa, all are English speaking and have relatively high connectivity. Seguin says the most popular services so far are around pre and postnatal advice, as well as mental health.

“In a lot of African countries there is an alarming rise in depression and suicide. We wanted to focus on it (mental health) because we realized its becoming an epidemic in a lot of African countries,” Mokgwathise said from her base in Botswana.

Closing Down Africa’s Equipment Graveyards

Professor Tania Douglas, a biomedical engineer in South Africa has been researching and speaking about the need for health innovations to be homegrown to fit the local context they are in. Leapfrogging is important for health innovation in Africa, but so is completely new ideas.

“Learning from the solutions that have already been developed elsewhere and adapting them to local needs (i.e. leapfrogging) is a potential shortcut to health innovation. But devising novel solutions to local problems that haven’t yet been addressed elsewhere is also important.”

In 2017 she delivered a TED Talk highlighting an “equipment graveyard” of imported medical equipment from hospitals in Africa which turn out to be unsuitable for local conditions, staff not adequately trained to use or maintain them, or they might not work in the humid and hot environments,or need constant and reliable supply of electricity often lacking across Africa.

In her talk Douglas points to an ultrasound monitor to track the heart rate of unborn babies in the equipment graveyard. These machines are standard in developed countries but developing -not so much. But expensive equipment is not needed for this, and there are plenty of locally-developed solutions that utilise simple technology proving this, integrating engineering with healthcare. The focus needs to be on creating more useful medical devices to help Africans, creating more inventors who know the issues and have homegrown solutions that work for the varied contexts across the diverse continent.

A customer using a Deaftronics hearing aid.

The Future Of Healthcare Tech in Africa

One of the companies Douglas highlighted in her TED Talk was Deaftonics, established in 2015, the company manufactures affordable solar powered hearing aids, made by hearing impaired people for people with a hearing loss.

Founder Tendekayi Katsiga focused on hearing impaired people in developing countries because he found a significant number of lithium battery hearing aids provided by NGO’s and governments to Africans die in their first month. Katsiga developed his solar-powered hearing aid in Botswana and currently is focused on getting them into the ears of children “presenting them with an opportunity to go to school.”

So far, Deaftronics has sold more than 10, 000 units of solar chargers in 40 sub-Saharan countries.

He’s excited about the future of healthcare tech in Africa, believing it will help eradicate diseases and improve overall health outcomes.

“The health tech landscape presents huge opportunities for Africans. It paves ways to make improvements in distribution of medicines using drones in areas which are not accessible. The rapid growth in access to technology, particularly mobile phones and network connectivity in Africa , has created opportunities for health programs, training and data management.”

Rare Diseases The Good Fight

In Sierra Leone, the Survivors of Ebola Fight Its Ghost

When he caught Ebola, Yusuf Kabba thought he was dead. Now, he fights the stigma and challenges that Ebola left behind.

When the ambulance came for Yusuf Kabba, his family wailed and said their last goodbyes. That ambulance surely meant death. Everyone else it took away never came back. It was October 2014, and Ebola was at its peak in Sierra Leone.

he deadly virus shook the West African nation and the world. In the early months of it no-one knew what was going on. When Kabba caught the disease, he and his family and friends had no idea you could survive it.

Now 28 with bright eyes and a wide smile, Kabba is living proof that Ebola is curable. As president of the Sierra Leone Association of Ebola Survivors, he has dedicated the last three years to advocating for his fellow survivors.

Since May 2014, the virus has killed around 4,000 people through the country. That’s just officially: experts believe it could be higher. Luckily, Ebola’s shelf-life in Sierra Leone was fairly short: in November 2015, Sierra Leone was declared Ebola-free by the World Health Organisation.

“Surviving Ebola was a miracle,” Kabba says exactly three years after he went through hell fighting the disease.

Yusuf Kabba posing with some of his fellow Ebola survivors.

The disease started in the east of the country but soon spread to the over-populated capital, where Kabba lived. He caught it from a doctor, who didn’t know he was infected. When Kabba started getting ill the ambulance came for him.

“The same ambulance had taken some of our family members. They died all of a sudden and the same ambulance came for me, that was a very big worry, if I was going to make it. The mentality by then was when you enter the ambulance, obviously, you are going to die. That was the assumption everywhere.  So, the ambulance stands at the front of the door and people start crying saying farewell to you because they think you’re not going to make it.“

The ambulance took Kabba to a holding centre where he was left for a few weeks to be tested for the disease. Waiting for those results was torture: the center was appalling, and the horrors of it are still fresh in Kabba’s mind.

“I saw a large number of dead bodies. I was really confused about that. The place was not tidy. You would see people vomiting blood everywhere, everything was untidy, no caring.” People were left without treatment “just suffering and dying” while they waited for their results. Sometimes the bodies were left in the center for days.

Kabba found the energy to argue with medical staff about the poor system they were running. “I believe in talking about things I think are not right,” he says. “I was really arguing  with them…” all while showing the telltale signs of Ebola, like vomiting blood and excessive diarrhea.

Before the ambulance came for him, Kabba says he didn’t actually think he was going to die. But once at the center, the truth seemed much starker: Ebola was a death sentence. “I saw the visible evidence all around me–those who were with me [at the center] all died. I thought I was going to die too.”

But he didn’t die, and while the Ebola holding center he was in seemed inhumane, his health workers hadn’t actually given up on him. Kabba was taken to a treatment centre, where he saw firsthand that people could recover from the Ebola virus. Within two weeks at the treatment center, he had regained enough strength to walk down a corridor. As he did so, he heard the sounds of everyday living through a window, and knew then that he would rejoin the outside world.

Kabba is living proof that Ebola can be survived.

Surviving ebola meant a new beginning for Kabba. After he recovered, he went to visit other patients still fighting Ebola, trying to show them that “hope is alive” and to keep fighting. And over the past three years, his organization has tireless worked to advocate on behalf of Sierra Leone’s Ebola survivors, and to end the disease’s grip on the nation.

“At the end of the day we succeeded,” Kabba says. “Our country was declared Ebola-free. That was a great moment for all of us as survivors, so we laughed, but it was also tragicomic:  we also cried, because while Ebola had gone, we’d lost so many of our friends and family members.”

Although Ebola may be gone from Sierra Leone, Kabba and his co-survivors are now fighting its ghost: stigma. “People think we are contagious,” he says. Through hard work and perseverance, Kabba his team and other campaigners have worked to integrate survivors back into their communities. A major coup was getting Sierra Leone president Ernest Bai Koroma to meet with and publicly support Ebola survivors.

With the stigma of Ebola now largely overcome, Kabba’s group focuses on advocating for improved medical care in Sierra Leone, especially for Ebola survivors. While his health is okay, Kabba says that many fellow survivors suffer from a variety of ailments, including blindness, insomnia, fatigue, and impotence. The weakened immune systems of Ebola survivors also can lead to deaths.

Despite it all, though, Kabba is living prove there is life after ebola. “All of us who have gone through this believe in a pathway towards a brighter future,” he says.

 

Mental Health The Good Fight

Fighting Cancer In A Country Without A Word For It

Philippa Kibugu-Decuir aims to prevent breast cancer deaths in East Africa using a survivor’s most powerful weapon: knowledge.

Teaching is, and always has been, Philippa Kibugu-Decuir’s calling: from the time she was a little girl giving lessons to her playmates, to her combined 28 years teaching English and Special Education in Houston, TX.

It’s fitting, then, that the motto that steers the efforts of the nonprofit organization she founded, Breast Cancer Initiative East Africa (BCIEA), is “Knowledge Is Power.”

“Knowledge liberates people from ignorance, poverty, and disease,” Kibugu-Decuir says. “Learning is a privilege in Africa, the only way out of poverty. Teachers are highly respected.”

Operating in both the U.S. and Rwanda, BCIEA’s mission is to improve and save the lives of low-income women in East Africa by providing access to information about breast cancer prevention, detection, diagnosis, and treatment. By conducting awareness campaigns and training local breast cancer survivors and volunteers to educate their neighbors, BCIEA combats misinformation and increases breast cancer awareness one person at a time, one village at a time.

Philippa Kigubu-Decuir, founder of the Breast Cancer Initiative East Africa,

Kibugu-Decuir has strong personal ties to central East Africa. Born in Rwanda, she was raised and educated in Uganda. Her two children were born in Kenya. Much of her extended family lives in Tanzania. Such close-knit ties to such a vast region have influenced Kibugu-Decuir’s approach.

“Initially I wanted to start very small,” she says, “but things changed when I realized that the magnitude of my message could not be limited. I could not deny any of them a chance to hear life-saving messages about reducing their risk of breast cancer.”

Kibugu-Decuir launched BCIEA in 2008 using Rwanda as an incubator to develop her strategy and programs, with plans to replicate her successes in neighboring countries.

Even with a focus on a single country, however, disseminating accurate breast cancer information in the region has proven a steep uphill battle.

A Foe Without A Name

Since the 1980s, breast cancer awareness as a health and social advocacy movement has become such an ingrained part of the collective American mindset that a basic understanding of and about breast cancer is almost assumed as a given. The absence of breast cancer knowledge that preceded this decades’ old push in the U.S., however, still exists in much of East African culture.

Thus, when we talk about the need for breast cancer awareness in East Africa, Kibugu-Decuir says, we’re talking about a medical and social issue steeped in “ignorance, misinformation, myths, silence, and stigma.”

We’re talking about a medical and social issue steeped in ignorance, misinformation, myths, silence, and stigma.

In Rwanda, for example which she says is indicative of the larger East African region breast cancer was initially viewed as a disease exclusive to rich white people. Lumps and breast anomalies in black women were rather viewed as a curse, deserving of fear, shame, guilt, and ostracization.

Women who’ve had breasts removed through mastectomy (the standard treatment in Rwanda) may be considered insufficient, incomplete, or “damaged goods.” Kibugu-Decuir points to a regional curse indicative of the social and cultural stigma associated with breast cancer: “May you have your mother’s breasts cut off.”

The problem is often compounded by a belief that talking about a subject can bring it upon oneself. Rwandan women have told Kibugu-Decuir, “You can’t talk about [breast cancer]. If you talk about it, it’s going to be contagious. People will shun you.”

In fact, Kibugu-Decuir notes, Rwanda’s national language, Kinyarwanda, has no word for cancer.

These issues of avoidance and misinformation, coupled with widespread poverty, illiteracy, and severely limited or no access to screening and cancer care services like mammography, radiation, and chemotherapy, contribute to incorrect and delayed diagnoses. Many women in Rwanda and East Africa don’t know they have breast cancer until the disease has reached an advanced stage.

Rwanda’s national language, Kinyarwanda, has no word for cancer.

With early detection and treatment, however, many of these deaths might be prevented. “We are working hard to convince Rwandans and East Africans that breast cancer is not a death sentence, does not discriminate, knows no boundaries, and that men, too, can have it,” Kibugu-Decuir says.

So how do you get people talking about an issue just the mention of which may be considered fatal?

The first step, she says, is to earn people’s trust. In this, Kibugu-Decuir has a special advantage. Not only does she speak the language and have ties to the region: she also has strong personal ties to the breast cancer experience herself.

Kibugu-Decuir’s history with breast cancer, however, doesn’t actually begin with her own diagnosis. It begins with that of her eldest sister, Mabel.

In East Africa, breast cancer is often viewed as either a curse, or an affliction that only effects white women. Neither is true.

A Difference in Diagnoses

Mabel was rarely sick, Kibugu-Decuir says, and, like her contemporaries, knew little about breast cancer. Unfortunately neither did her doctors.

When Mabel fell ill in the mid-1980s, there were no cancer care services or support groups in the Democratic Republic of the Congo’s capital city of Lubumbashi where she lived. There were no early detection screenings. There were, in fact, no oncologists. To the medical establishment at the time, Mabel’s illness was a mystery.

By the time she was airlifted to London for surgery, the cancer had already spread to her liver. Mabel died of metastatic breast cancer in 1986.

“It’s been 31 years since Mabel died, yet it’s like yesterday,” Kibugu-Decuir says. “Her death left us with an incredible, gnawing pain. It would end up being the catalyst for starting BCIEA.”

Philippa knitting.

Mabel’s experience is typical of many East African patients still. By comparison, Kibugu-Decuir says, her own diagnosis and treatment in the U.S. eight years later “was a breeze.”

“Unlike my sister, by the time I got my diagnosis in 1994, I had excellent health insurance,” she says. “I was an informed patient. My cancer was detected early. I had an excellent team of doctors and a strong support system that included my family, church, and members of a breast cancer support group.”

Kibugu-Decuir underwent a double mastectomy with reconstruction and chemotherapy. For all the resulting side effects including pain, hair loss, nausea, and despair she recognized the advantages of her situation. Unlike her sister, Kibugu-Decuir had options. She had hope.

The dichotomy between her experience and her sister’s left Kibugu-Decuir with two nagging questions. Would Mabel still be alive if she had lived in the U.S.? Should where someone lives determine if they live or die?

Spreading the Word

Disturbed by these questions, Kibugu-Decuir determined to do something to disentangle cancer survival from the sheer luck of geography. To raise money for a fact-finding mission to Rwanda in 2007, she sold off some of her clothes at a silent auction held in her living room.

Despite a population of more than 10 million at the time, Rwanda had zero oncologists, or any form of cancer screening, treatment, or palliative care, Kibugu-Decuir says. Of 10 doctors she surveyed on her fact-finding trip, only two had ever even heard of breast cancer. She also met a group of 27 women whose “mind-boggling” cancer experiences encapsulated the need for action.

Each of the women had had at least one breast removed by the equivalent of a family doctor or general practitioner. None had received pain medication or post-surgery follow-up care. One woman’s doctor had removed the wrong breast, but she was unwilling to undergo a second surgery, preferring the inevitability of death with one breast intact.

Kibugu-Decuir describes these women as desolate, frail, and frightened. They held no hope for survival. Rather, they told her, “We’re just waiting to see who will go first.”

If women couldn’t access the information needed to keep them alive, then the information needed to go to them.

Kibugu-Decuir’s instincts as an educator kicked in. If women couldn’t access the information needed to keep them alive, then the information needed to go to them. Kibugu-Decuir and therefore BCIEA had to take the message to the people.

Kibugu-Decuir trained the 27 women to become BCIEA’s first village ambassadors, carrying up-to-date breast cancer information and their experiences to their communities through civic events, church and professional groups, youth programs, and one-on-one’s. By sharing information through already trusted members of these communities, BCIEA facilitates conversation, spreading awareness and helping combat misperceptions that would otherwise silence discussions before they’d ever begun.

“When you are willing to give a bit of yourself, people listen,” Kibugu-Decuir says, “so I talk about myself and my sister. [Mabel] represents them, and they empathize with me, and I can gain their trust. I use the same method to train breast cancer survivors. Once they’re out of the closet, they become our ambassadors among their own people.”

Rwanda has made notable strides in cancer care in recent years. The country now has two oncologists and has opened its first national referral facility in northern Rwanda.

Once [breast cancer survivors are] out of the closet, they become our ambassadors…

But with so little access and information still available to most of the population and the ability to go abroad for treatment restricted to those who can afford it, combating breast cancer for much of the country’s poor rural and urban women is left to the women themselves.

“BCIEA’s goal is to place the Rwandan woman at the steering wheel as the key agent of change,” Kibugu-Decuir says. In the absence of mammography, for example, women are trained how to conduct breast self-exams, empowering them with preventative knowledge for themselves and future generations.

By 2016, 24 of the original 27 village ambassadors had died. But thanks in large part to their efforts, nearly 9000 people had been reached with potentially life-saving information.

Kigubu-Decuir’s work advocating for breast cancer victims has gained her friends around the world.

BCIEA has 17 ambassadors currently active, and Kibugu-Decuir has begun to expand the organization’s reach by way of an app that provides basic breast cancer detection and treatment information.

She is also working to raise enough money to provide one smartphone loaded with the app to each of 250 Rwandan villages. She estimates 250 ambassadors each equipped with a smartphone have the potential to reach up to 200,000 people.

“If I can get support for [the One Smartphone Per Village program], we can exponentially cover the whole country with awareness,” Kibugu-Decuir says. The program also lays the groundwork for expansion into Uganda, Kenya, and Tanzania.

Successes Big and Small

While BCIEA’s primary focus is to increase survival through early detection, the organization also works to support women during and after diagnosis. In this way, Kibugu-Decuir’s education efforts turn from the preventative to the practical.

This past October, for example, Kibugu-Decuir worked with Barbara Demorest (whom Folks featured last summer) to bring Demorest and volunteers from Demorest’s organization, Knitted Knockers, to Rwanda to teach 30 local women how to knit yarn-based breast prosthetics.

As part of the trip, “[Kibugu-Decuir] organized events, connected with key hospital personnel, met with [Rwanda’s] Minister of Health, and worked tirelessly to accomplish her mission,” Demorest says. “Philippa’s heart and focused purpose of spreading breast cancer awareness to the women of East Africa is so inspiring and contagious. The country is fortunate to have such a great advocate for their women.”

Although Kibugu-Decuir emphasizes that she’s “a teacher, not a politician,” BCIEA collaborates closely on activities and events with Rwanda’s Ministry of Health and Non-Communicable Diseases Department. She has also met with Parliamentarians and Rwanda’s First Lady.

Members of Breast Cancer Initiative East Africa and Knitted Knockers have teamed up to make knit prosthetics for women who have had mastectomies.

Kibugu-Decuir would love to live to see a cure for breast cancer and hopes to see the government expand its infrastructure further to help turn more diagnoses in Rwanda into survival stories like her own. She was declared cancer-free five years after her diagnosis and has since celebrated what she calls her 22nd “survisary.”

But she recognizes that success can also result by simply shining a light on the problem. As an example, she cites a crying woman who ran up to her last year, telling her, “You saved my life.”

“I said, ‘No, I didn’t,’” Kibugu-Decuir relates. “‘Actually, yes, you did,’ she said.”

In 2008, the crying woman had been diagnosed with breast cancer but had been denied a visa to go abroad for surgery: the government refused to grant medical visas to anyone who could be treated inside Rwanda. Barred from leaving the country, the woman resigned herself to die.

Then she came across an article Kibugu-Decuir had written that same year, urging Rwanda’s government to establish a policy to address the country’s need for cancer care services and clearly articulating the absence of available treatment options.

That article became the key the woman needed to open the door to treatment. The woman returned to the embassy with Kibugu-Decuir’s article in-hand, Kibugu-Decuir says, “and they gave her a visa.”

“Even if I don’t do any more, I’ve touched one life,” she says. “My sister is smiling up there, wherever she is. That’s the kind of little thing that makes what you do worthwhile.”

Mental Health The Good Fight

Ghana’s Purple People

In Ghana, where mental health issues are widely misunderstood, a homespun support group helps people suffering from anxiety and depression.

Ceiling fans, planes flying above her hostel and anxiety over school work used to send Sandister Tei into a state of panic and shakiness.

When she went to a local doctor in her home country Ghana to try find out why she was having strange thoughts and these physical reactions to them, she was told she had malaria–a common disease caused by mosquito bites in this West African country.

At 19, she knew this diagnosis was wrong. She knew what malaria felt like, but didn’t see the connection to her current state.

Sandister Tei was 19 when she started suffering from anxiety attacks. She was diagnosed with malaria instead.

“Being nervous and panicking about things, I didn’t think malaria could do that to me.”

So, she did her own research on Google and happened upon the word “serotonin,” telling her that what was going on was more likely to do with a chemical imbalance.

It got her thinking about how she was as a child, she often suffered  fatigue and would worry a lot. People would accuse her of being lazy, or that she kept to herself too much. Her school work suffered as did her self-esteem. Thanks to Google, she had some light thrown on her situation.

“I did more and more reading and realized this thing is not as exclusive: there are others out there,” Tei, now 30, and an online journalist for one of Ghana’s top media houses, recalls.

Journalism Leads To A Proper Diagnosis

She found ways to try and cope and deal with her mental health problems, but it affected her university life. She was studying geography at the University of Ghana when she started working towards a career in journalism, kicking it off with the student rags and local newspapers.

She then started blogging, and posting on Facebook, which lead her to wanting to work in online journalism.

“Being nervous and panicking about things, I didn’t think malaria could do that to me.”

Tei sought out opportunities to learn more about online journalism, with her eyes set on studying outside Ghana, as she did not see any courses within the country that had this focus.

In 2013, Tei landed a scholarship to do her masters in journalism at Cardiff University in Wales.

It was in Wales that she went to another doctor and was properly diagnosed with depression.

That diagnosis and the treatment turned her life around, her grades improved as did her energy levels. It got her thinking about the years she suffered in Ghana, because no one was able to tell her what was going on with her health.

“If I had someone to tell me to go to the hospital to get this drug, maybe I would not have suffered this much needlessly for like ten years. So that is when I thought I should be able to tell people about this, to help somebody. I am not going to administer drugs, but tell them you might want to go to hospital because there is medicine for your problems.”

When she came back to Ghana in 2015, she felt it was only people who knew about mental illness that would speak about it.

There wasn’t too much education available on mental health. “It wasn’t a national conversation,” she found.

This is something the experts echo. In 2016, Executive Director of the Mental Health Authority, Dr. Akwasi Osei, told local media mental health care in Ghana needed critical attention. He said  Ghana’s doctor-patient ratio in the mental health sector stands at 1:1.7 million as compared to 1:1 million in Nigeria and 1:50,000 in Kenya. He quoted a report that suggested  41 percent of the population, predominantly women, suffered from mental distress and depression.

41 percent of Ghana’s population, predominantly women, suffer from mental distress and depression.

In late 2016,  nurses from the Accra Psychiatric Hospital went on strike to highlight how dangerously underfunded the facility was. It is often in the news for not having the means to feed and medicate its patients. In the capital Accra, it is hard not to notice the number of mentally unstable people left to fend for themselves on the streets.

With this context, Tei decided to start a mental health support group in Accra.

Ghana’s Purple People

A friend organized a free space for her to hold the meetings, and she named the group Purple People – an affirmative name for an affirmative group.

“When you are depressed, anxious or when you are in a very bad mood, people say you are feeling blue. Purple has some blue in it, and the color purple is linked to royalty, well-being, affluence, goodwill. A lot of positive things. I think that even though we are ‘blue people’ we have the potential to crossover to the purple space.”

There are about a dozen members, they can meet each week, whoever feels like meeting, can do so.

Tei Sandister founded Purple People as a way to help raise awareness of mental health in Ghana.

Tei keeps contact with the members in a private Facebook group, and then has a public page to post articles on mental health and to advertise the group meetings if people want to join.

Purple People seek to listen to each other on common experiences, share and shed light on coping strategies to help each other while also encouraging members to seek professional help.

Since she advertises the group through social media and a blogger email list, she has found most of the members are professionals in Ghana, aged 27 to about 36. There are health care workers, an entrepreneur, software engineer, an environmentalist and Tei is a journalist.

While the group members are well-educated, living in Accra, eventually Tei wants to be able to target those in this country who might not have the same access to information.

“With Purple People, all of us can speak English and all of that but at a certain time I will focus more on people who can not speak English or even access Google, or don’t have the internet.”

She plans to try spread the message of her group in one of Ghana’s local dialects–Akan, through local radio stations in the future.

With the current formation of Purple People, she says, people don’t just connect in the weekly meetings. 

“There have been times people will write there [in the Facebook group] they are feeling really bad and need help – can someone get to them. I don’t want to call it a hot line, but eventually it became something like that.”

When this happens, members will rally and get the person the help they need.

Despite starting the group, Tei also uses it to learn more about her own issues.

Last year, amid work-related problems, she started developing intense anxiety.

She turned to the group for some pointers on what was going on and how she can help manage it.

“I set up a group but ended up going back to the group and asking ‘I know some of you have panic attacks already how is this thing like’?”

In Ghana, if a person seeks treatment for depression, they are likely to be taken to a hospital or a church group.

Another member of the group held a session for those who wanted to learn more about anxiety and shared coping mechanisms.

However, Tei is quick to point out that the group does not try, or seek to treat people, but instead helps them finds ways to get treatment, or deal with issues.

They support each other to go to the hospital to get professional help.

Tei explains that in Ghana, if a person seeks treatment, or someone seeks it on their behalf they are likely to be taken to a hospital, or a church group. Ghana does not have the General Practitioner (GP) system many western countries have.

In cases where someone might be aggressive, Tei notes they might be checked into a psychiatric  hospital, though depending on who is trying to help them, they might end up at a church, under the belief that prayers will fix them.

It was Google that helped her realize her racing head wasn’t malaria, and it was through the internet she brought Purple People together. And with her whole work being about being online, this extends to the little free time she has as well. Tei is involved with the Wikipedia community, where she edits Wikipedia Ghana. She is a co-founder of the Wikipedia Ghana community, and one of its representatives.

A Changing Direction

While she had to search hard to identify what was going on with her 11 years ago, Tei says there is a lot more mental health awareness and advocacy in Ghana now. Those who feel like they are lost in the dark luckily have more avenues to turn to.

Those who feel like they are lost in the dark luckily have more avenues to turn to.

“I have turned on the radio a few times and heard people talking about mental heath, and I have read a few articles here and there of people talking about depression.

“I have sat in meetings where people have come out and said ‘Hey I am depressed, have anxiety or am panicking’,” Tei says.

“I get the impression people are becoming more aware and speaking up.”

 

Immune & Autoimmune Diseases The Good Fight

Breaking The Cone Of HIV Silence

In Kenya, a woman organizes her community to fight the stigma of AIDs.

The year was 2006. Joyce Nipher, then a 38-year-old housewife with three children, found herself an AIDS widow with an HIV positive status and negative finances.

“I thought to myself: ‘Where am I going to start? I’m not working, I have to pay house rent, I have to pay school fees for my children.’ You couldn’t recognize me at that time, I was just like this,” she says, imitating a small, hunched over woman with her head down.

The Kenyan woman’s life has been demarcated by the scourge of AIDS, though to see her now you wouldn’t know it.

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Joyce Nipher.

Mama Brian, as she’s known in the East African manner that renames woman after their first sons, has a broad smile and an easy laugh. The cozy one-room shanty she now lives in, decorated with photos of her posing with international friends and of Brian at graduation, is a vast improvement on the slum she was living in a decade ago.

Nipher estimates 75 percent of the people she knows are living with HIV. Her uncle was the first in her family to die from the immunodeficiency syndrome in 1995, before her sister in 1999.

In 2002, she noticed she was getting sick all the time and not recovering.

“I caught malaria. When I took the drugs for malaria, it was not getting better. Then I decided to go for a test. I was tested for HIV and it was positive.”

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75% of the people Joyce knows are living with HIV.

Nipher is not certain how she contracted HIV, as she has had blood transfusions at the hospital before. However, she knows her husband, Moses, was sleeping with other woman, unprotected.

To make matters worse, he refused to get an HIV test done even when her own status became clear.

“For my husband, he said he didn’t want to hear about HIV. If he heard he had HIV [he said] he would poison everyone in the house.”

Until her diagnosis, Nipher continued to have unprotected sex with her husband.

She says she never thought about the possibility she could contract HIV before she started getting sick. There was very little awareness about the AIDS epidemic that began in in the 1980s.

In 2005, Moses was admitted to hospital but he again refused an HIV test, instead being diagnosed with tuberculosis–a common AIDS comorbidity. The World Health Organization estimates the risk of having tuberculosis is between 26 and 31 times greater in populations with HIV.

joyce-2

 

An alcoholic, Moses continued to drink while taking his medication and eventually died of meningitis seven months later.

She was angry with her husband for his refusal to fight to survive, she says, “but then what could I do?”.

“It really hurt me. I was like, ‘When he is going to die how am I going to take care of the children? I’m not a working woman, I’m just a housewife, I don’t have any work’. I was very thin, I was sick.”

When a Canadian foundation first came into contact with Nipher in 2006, she was lying on her deathbed in the Nairobi slum of Kijiji–which means ‘village’ in Swahili. But the foundation offered her a lifeline, put her three sons in school, educated her about HIV/AIDS and even gave her money to start giving HIV awareness trainings in her area.

She began making money slowly through giving awareness trainings, supplementing this by washing clothes and cleaning houses.

In 2008, Nipher decided to start her own group, Women Against Stigma. The group began with 10 HIV-positive women from her slum, with the idea to be open about their HIV statuses in order to combat the secrecy and fear that Nipher says often accompanies the illness. Fear of stigma prevents people from seeking treatment, she says, and is the reason her own husband died.

joyce-8

“Many people were dying because of the stigma.”

“Many people were dying because of the stigma. We said ‘No, we have to come up and do something to support the people who are dying’.”

There are now 26 women in the group, although stigma is still a problem in their local communities and only ten are open about their HIV status. However, the women band together to help each other find economic power.

“We decided to start making beads, we can make smart jewelry, we can go and sell.”

The first beads were bought with funds from a German group that Nipher met through one of her HIV trainings. As the years have passed, the women have added more skills to their retinue; weaving baskets, making detergents and tie-dying clothes.

Each woman is entitled to a KSH6000 loan (USD$59), but they must pay KSH1000 back each month over the course of six months plus an interest of KSH100.

That money is pooled, interest compounds and then that money is channelled into one of the existing businesses; or, ideally, into a new business entirely.

The women are now looking to buy a house when they have enough saved up.

“It’s better to work together,” Nipher says. The women work largely from home and visit clients around where they live, but meet up once or twice a month to discuss business, among other issues.

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HIV medication can be hard to come by in Kenya.

It is still hard to make sales at times, given the poverty in the areas in which they work, but it has given an economic pathway to women who have lost jobs or husbands or been ostracized by their families.

Nipher is a known advocate in the slum she has now left behind, thanks to the economic advantages she has gained since she began Women Against Stigma.

She is also the first person many in the slum turn to when an HIV positive result comes in.

“They used to hate me, but nowadays they love me. When someone is sick, I get a phone call [saying] ‘You’ve got to come and take her to the hospital, come and talk to so and so’.”

That’s a big change from the discrimination she used to face 10 years ago.

“When you go to someone to ask for a job, they’d say ‘She’s HIV positive, she cannot work here’. I could not even talk with people in the beginning.”

Joyce even lost a job cleaning a house in 2007, after her employee discovered her taking antiretroviral drugs, or ARVs.

“Everyone thought I was going to die and my children could not go to school, but now they are wondering,” she laughs.

Nipher also volunteers three times a week in an orphanage run by the Canadian NGO that originally helped her, the Hanne Howard Fund.

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“Women against stigma.”

A number of orphans are AIDS orphans and a handful are HIV positive. It is these orphans who Nipher has a particular interest in looking out for.

As part of her outspoken role, Nipher has sung songs and written poetry encouraging the community to combat HIV stigma. One she can still recite from memory:

“Oh let me speak, oh let me write, oh let me tell people I can remember, I can remember, I can remember. My beloved sister died, my beloved uncle died, my beloved husband died. It was because of the stigma. I am living because I am above the stigma. You people living with HIV speak out the status, you people living with HIV preach the gospel on HIV and Aids, you people living with HIV, don’t joke around with Mr Virus. Fight the stigma of discrimination with all means.”

All photos by Humphrey Odero. 

Disability Profiles Vision & Hearing Loss

Blind Rhythm And The Battle Rapper

After malpractice took his vision away, Kennedy Ayikwao regained his confidence rapping in the streets of Ghana.

Like any young, aspiring rapper, Kennedy Ayikwao oozes confidence. He’s not shy to point out he inspires himself; he brags that he will win a national music award for his work within a year.

His raps are about his favorite subject: himself. He raps about his life, his struggles, his ambitions, and his love for his art. Surrounded by friends and fans at his university campus in the West African nation of Ghana, Ayikwao–whose stage name is Kenzey– is most in his element spitting rhymes, rap-battling with a friend to a beat made by a crowd slapping their chests and feet.

Ayikwao puts all the money that comes his way into recording and promoting his music. He jokes that he is living off rice so he can pay to get his latest single out there to the masses.

So in most ways, Ayikwao is the quintessential rapper. The only difference is, Ayikwao can’t see what’s going on around him. After losing his sight as a child due to a medical accident, the University of Ghana student, now 22, uses rap to talk about his experiences as a sight-challenged person living in Africa, and to speak out for the vulnerable in his society.

Born in the capital Accra, where he now studies, Ayikwao started losing his sight when he was four. It was a gradual, and unfortunate loss, he says. At four, Ayikwao’s family first noticed he had issues with his sight when his father handed him a toy airplane. He was unable to locate it. 

Ayikwao’s family took him to the hospital, where it was discovered there was something wrong with his right eye. He was prescribed a corrective lens, but the prescription was switched, so that the lens meant for his right eye was instead prescribed for the left eye. “Gradually, it affected the sight in my left eye,” Ayikwao says. “It didn’t solve the problem, but rather brought on another problem. That was when [sight] became difficult for me.”

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Ayikwau and his posse of fellow students at the University of Ghana.

As his vision became poorer, Ayikwao fell behind in school, unable to read from the chalk board. He was left back multiple times before he eventually learned to read braille. As hard as days were, though, nights were even more difficult for young Ayikwao. “That was when I felt like the whole world was against me,” remembers Ayikwao. “I couldn’t see in the night. I thought I was the only person with this problem in the whole wide world. I said to myself: why am I odd? Why am I like this?” He felt like his “existence was going to be worthless.”

Depression followed. Ayikwao went through a phase of not wanting to leave the house; he stayed in his room all day, crying. But soon, the shy child realized he needed to pull himself together. He couldn’t spend the rest of his life in a bedroom that was fading away with his sight. When his father bought him a bike, Ayikwao decided to learn to ride it, taking advantage of the sight he still had, while he still could.

“The bicycle kept my mind busy,” he remembers. “I kept roaming as a means through which to get to know places. I used to roam a lot. I was a roaming ambassador!”

When Ayikwao finally lost his sight completely around 2007, he was moved to a boarding school for the blind in the eastern region of Ghana. Eventually, he graduated, and moved on to the University of Ghana in Accra, where he still studies. But life is a challenge; Ayikwao is quick to note the realities of being blind in Ghana.

“I have to make use of those around me,” he says. “I can’t be fully independent.” For example, the cedi–Ghana’s national currency–has not been designed with visually impaired users in mind. “It’s not like the dollar, where there are marks on it to make it possible for visually impaired to identify the amount they have.” You have to show it to someone to check for you to see how much the bill is for.

Luckily, Ayikwao has a right-hand man to rely on, both on campus and on the stage: his manager and fellow student, Alex Kwaku Frimpong. Not only does Frimpong help Ayikwao get by on a day-to-day basis… he helps Ayikwao pursue his life’s major passion, rap.

Kensey and his manager

Kenzey and his best friend and manager, Alex Kwaku Frimpong.

Before he started rapping, Ayikwao was always singing. As a child, he would pick up songs easily, singing boisterously in church and at family gatherings. In 2011, though, he started rapping. At first, he practiced by reciting the rhymes of Sarkodie, Ghana’s most famous rapper, but soon, his friends were encouraging him to come up with original tracks.

As his stage persona, Kenzey, Ayikwao combines English, a local dialect called Twi, and pidgin English to express himself through his music. This year he released a track that details his life history, called ‘I’m A Star’. He sings and raps through it, detailing the inspiration his late mother gave him, assuring him he would one day ‘be a star’.

“My music is about my whole life. It is self-inspired and spirited,” he says. His inspiration comes from the things that have happened to him, and the dreams he has; like a rapping Coleridge, Ayikwao says he sometimes dreams entire songs, then wakes up and puts them down to paper.

His music has been key to empowering him as a sight-challenged student living in Ghana, but Ayikwao wants to do more than inspire himself. He also wants to inspire others to achieve greatness in their lives. He hopes that by creating and performing his music, he will be able to advocate on the behalf of others who are visually impaired.

In Ghana, sometimes a person who has a disability is seen as a punishment from God. Luckily, Ayikwao says these beliefs are changing. “Culturally, [blind people] have not been treated fairly [in Ghana] but education is permeating very fast, so at least it is working, [teaching] people to recognize that me and my kind are not so different from them.”

The future feels bright for Ayikwao. He sees awards in his future. 

“With my music, right now I am very confident that if I get enough support I won’t be far from getting an award next year at the Ghana Music Awards.”

But Ayikwao is also serious about his studies. After completing his political science and philosophy degrees, he wants to study law, with the ultimate plan being a human rights lawyer, keeping his music career going alongside this profession.

Working in human rights will be a way to further advocate for Ghana’s vulnerable, he says. “People get their rights trampled on based on their disabilities,” says Ayikwao. His goal is to change that. He wants his work, both in the studio and the court, to be an “eye opener” in Ghana, changing the way those without disabilities see the blind… and even helping to change the way the blind in Ghana see themselves.

 

Mental Health Profiles

Changing Ideas About Autism In The Developing World

Mary Amoah and her beautiful daughter Renata are challenging preconceptions about what it means to be normal in the African nation of Ghana.

Mary Amoah once thought witchcraft was behind her daughter Renata’s silence and odd behavior.

The Ghanaian mother said she did what any other mother like her would do – she prayed, she tried different ways to lift the ‘curse,’ and then she attempted to deny there was a problem.

Renata Kuffour was fine as a baby, as a toddler she started speaking a few words, but then, just before she was three, they disappeared. Mary, a teacher of 13 years, started to worry. She left her job and started trying to find out what was wrong with her daughter.

“She would hardly look at us. She had very poor eye contact she would want to play by herself, running in circles or spinning items…she would stare at her hand constantly,” Mary recalls, speaking from the family home in Accra, the capital city of the African nation of Ghana.

Renata wasn’t potty-trained,  so she couldn’t go to school. Mary took her to different hospitals but was always told her daughter just had delayed development.

Renata and her mother share a smile of understanding.

Renata and her mother share a smile of understanding.

She wouldn’t sleep, instead she would stay up singing. “That actually made me believe it was actually something to do with witchcraft,” Mary says. “Why would a child talk to herself, sing to herself, if she didn’t want to interact? Sometimes she might recite prayers but not really connecting with you, those things made me believe that it was probably something to do with spiritual forces.”

Acting on this belief, a desperate Mary took the advice of a woman who told her she could help her child by going to a market at the end of the day and collecting food scraps to cook for her. The woman told her doing this would mean Renata’s spiritual destiny would be safe, essentially lifting a curse off her.

“I am educated,” Mary says.”[But] I believed all these things and did [them].”

Why would a child talk to herself, sing to herself, if she didn’t want to interact?

It wasn’t until a friend visiting from the United States suggested Renata had autism that Mary realized what was happening with her five-year-old. She joined 52 different groups on Facebook to learn about the condition, which often results in delayed development and impaired social interaction. She also began to speak to other mothers with autistic children. It opened Mary’s eyes. In Ghana, she realized there was a vast population of undiagnosed autistic children, just like her daughter. 

It wasn’t easy being told her only daughter might not be able to work, that she may need help for the rest of her life, Mary recalls. But, unlike many other families in Ghana where those with disabilities are hidden or rejected, Mary decided to take action. She wanted her daughter to be able to be helped and accepted by Ghana’s conservative society.

In order to support her daughter and other children like her, nine years ago, Mary started working at a support center in Accra for children with speech and language difficulties, like Renata.

The center supports children with a range of speech or communication issues, taking in children with disabilities like autism, Down Syndrome, cerebral palsy or hearing impairments, for example.

Renata plays with her mother, Mary.

Renata plays with her mother, Mary.

As the center coordinator, Mary and her colleagues advocate to bring parents together to encourage them, and let them know that as difficult as things may be “it’s not a dead-end situation”.

This was a lesson she learned in the USA, when she was offered a place on a program for parents of autistic children at the Autism Treatment Center of AmericaWhile she got a scholarship to attend the Massachusetts center in 2013,  friends and family rallied together to pay for her airline ticket. The program taught her autism isn’t a ‘dead-end’ diagnosis, and that the parent is an autistic child’s best resource. She also met other parents in the same boat who she can still call on for  support and advice.

Coming back from the program she was inspired to take on its messages, and share them with other parents. “If the parent understands the condition, they are in a better condition to support their kids,” says Mary.

With all the support, love and work with Renata, now 13, she can sit quietly and follow her parent’s simple directions.

Mary calls her over for a kiss, and she obliges, then goes back to her seat. It’s her favorite spot, because the foam has compressed where she has sat over the years, allowing her to literally leave her mark on the space. 

Every now and then, Renata — now a beautiful teenager with big eyes and a warm smile —  will start humming, and that hum will build into a song. She will laugh, bounce in her seat, and then get up to wander into the next room, or spin around in a circle.

Mary watches on, smiling. “If she’s happy, I’m happy,” she says.

Renata and her family.

Renata and her family.

In most ways, Renata’s family embodies what Mary and the center advocate to those who have children with communication difficulties: the whole family is involved and responsible for her.

Mary’s husband, Benjamin Kuffour, is a teacher at a boarding school in Accra. The family lives in a large house on the school campus. The lanes are lined with trees and the family has their own large, tranquil backyard.

Renata’s older brothers, Charles, 18 and Emmanuel, 16, will take her on daily walks, while the family takes turns taking her to church. They also support her in her specialized diet -gluten and casein- free. She was put on the diet in 2013 and since then it has helped with Renata’s concentration and stabilizing her moods, she now sleeps well and is a lot calmer, Mary says.

Like many teenagers, Renata can be a fussy eater, Mary says. But she eats a lot of rice, vegetables, soup, chicken, and fish. She’s even starting to like fruits. “Once she sees every member of the family eating the same thing, she is motivated to try it,” says Mary.

Renata likes to run in circles, which can make people dizzy to watch. Still, the family likes to join in occasionally. “As long as it makes her happy, and she is not injuring herself, that’s fine with us,” Mary says.

Renata's family portrait, amongst the other women of her family.

Renata’s family portrait, amongst the other women of her family.

When she was younger, she didn’t like wearing clothes, which meant they could not take her out. But the family worked hard to get her used to clothing. She went through a stage of only wanting to wear tight things, so Mary dressed her in swimsuits. With sensory therapy–in other words, getting Renata used to things touching her body–she now wears glittery sandals and bold, African prints.

It’s important to Mary to dress her well, because it’s a way to project that her daughter is a person, not a disability.

“There was never a point where we saw her as a lesser person among us,” Mary says. “We have always cherished Renata, and supported her in any way we can.”

Aside from helping Renata with her day-to-day needs, Mary is focused on educating people on autism, where the condition has considerable stigma. Because she is not physically disabled, people struggle to understand why Renata is the way she is.

“That was one of the most challenging things we had to deal with,” Mary explains. “In Ghana, I think people are more used to ‘traditional’ disabilities. But when they have a child with autism and there is nothing to show on the outside, people don’t see it as a disability.”

In July, Mary took Renata to a playground, where Renata showed how happy she was by running in circles. Pleased with Renata wanting to play, Mary went to join her, grabbing her hands and playing ring-around-the-rosey. “Everyone went silent,” Mary remembers. Mothers in Ghana just do not play with their teenage daughters like that.

Renata’s autistic, but that is not all there is to her.

She explained to the shocked parents looking at her that Renata was autistic. As they left, one of the mothers confided to Mary that she had a child like Renata, but that she couldn’t handle him. When she brought her other children out to play, she left her autistic child at home.

It’s this stigma, this sense of hopelessness, that leads Mary to tell anyone who will listen about her “beautiful, lovely” daughter. She documents Renata’s life and their journey together on an open Facebook page.

Renata’s autistic, but that is not all there is to her.