CBM Italia in Uganda: Dot’s Story, a 9-Year-Old Affected by Retinoblastoma, a Retinal Tumor Endangering Children’s Lives in the Global South

Retinoblastoma is a malignant tumor of the retina commonly found in pediatric patients.

If left undiagnosed, it leads to vision loss and, in severe cases, death.

“This girl has a problem with her eyes,” begins the story of Dot, a 9-year-old girl born in a rural village in South Sudan and affected by retinoblastoma, a malignant tumor of the retina that annually affects 9,000 children worldwide (source: American Academy of Ophthalmology). It is the mother who notices that something is wrong; her daughter’s eye is very swollen, and she tells her husband David, who is currently in Juba, the capital, attending the second year of his agricultural university course.

“The elders of our community said it wasn’t serious. They tried some herbal remedies, but it didn’t improve. At that point, I told them to bring her here to the city where there’s an eye center that could help us,” David tells CBM Italia – an international organization committed to health, education, employment, and the rights of people with disabilities worldwide and in Italy – which works through local partners in developing countries, such as the BEC – Buluk Eye Centre in South Sudan and the Ruharo Mission Hospital in Uganda.

After traveling all night, Dot and David are finally together again: “Once we arrived, I immediately took her to the BEC, the only eye center here. They examined her, and the diagnosis was: eye cancer. The doctors told me she needed to be operated on at Ruharo, so we set off.” Ruharo Mission Hospital, located in Mbarara in western Uganda, is a reference point for eye cancer treatment in this part of Africa.

David and Dot embark on a 900 km journey from Juba to Mbarara: “Dot was immediately welcomed by the doctors who examined her, operated on her, and administered chemotherapy. We were there from May to October last year, both followed and helped every day to face this difficult battle for life. And, my little one, she won her battle!”

As often happens in these sub-Saharan African areas, since the disease is not recognized and treated in time, when Dot arrived at the hospital, the tumor was in an advanced stage, leading to the loss of her eye: “Having a glass eye is not a big problem; you can survive. Children can still do many things, even carrying a backpack and going to school. The only problem is that she is still young and needs a beautiful and safe environment. An environment where people are aware of these disabilities; if I were to take her back to the village now, I think they would leave her aside.”

Despite the disease that struck her, Dot is well, and her happy ending story represents hope for the many children affected by retinoblastoma: “Having only one eye doesn’t mean it’s all over. The next time you see her, if I can manage it, she will be an educated child. I will take her to a good school; she will study, learn with children of different ethnicities.”

Dot’s story is one of many that CBM Italia has collected in Uganda about malignant ocular tumors or retinoblastoma. The disease, in its initial stage, presents with a white reflex in the eye (leukocoria) or with eye deviation (strabismus); in more severe cases, it causes deformation and extreme swelling. Caused by genetic errors, hereditary factors, or those that may occur during the early years of life (in most cases within 3 years), retinoblastoma can develop in one or both eyes and affect other organs as well.

If not treated promptly, this type of tumor has serious consequences: from vision loss to eye loss, to death.

In countries of the Global South, poverty, lack of prevention, absence of specialized facilities, and doctors are factors hindering the early diagnosis of retinoblastoma, contributing to fueling the vicious circle linking poverty and disability: it is enough to think that the survival rate of children to the disease is 65% in low-income countries, while it rises to 96% in high-income countries where early diagnosis is possible.

For this reason, since 2006, CBM has been carrying out an important retinoblastoma prevention and treatment program at Ruharo Mission Hospital, which over time has increased the survival of children, together with the possibility of complete healing, while also preserving vision. Thanks to the introduction of a series of combined treatments (radiotherapy, laser therapy, cryotherapy, chemotherapy, surgical removal of the eye, use of prostheses), and awareness-raising activities in the area, today, Ruharo takes care of many young patients, 15% of whom come from: Democratic Republic of Congo, South Sudan, Rwanda, Burundi, Tanzania, Kenya, and Somalia.

CBM Italia, in particular, supports Ruharo Mission Hospital by ensuring immediate visits and diagnoses, surgical interventions, hospitalizations, and long-term treatments for 175 children affected by retinoblastoma each year.

The goal is to welcome and treat 100 new children every year, while 75 continue the therapy started in previous years. The project also supports families (coming from the most remote and rural areas) during hospital stays, covering costs for meals, transportation expenses for many visits, counseling interventions, and psychosocial support to ensure that young patients fully follow the treatment program that, otherwise, due to poverty, they would be forced to abandon.

Special attention is also given to the healthcare workers of the hospital, trained for the identification, diagnosis, referral, and management of retinoblastoma cases. CBM Italia also carries out intensive awareness-raising activities in communities to change the perception of the disease and ensure that children with vision problems are not only immediately examined but also accepted by the community itself.

Who is CBM Italia

CBM Italia is an international organization committed to health, education, employment, and the rights of people with disabilities where it is most needed, worldwide and in Italy. In the past year (2022), it has implemented 43 projects in 11 countries in Africa, Asia, and Latin America, reaching 976,000 people; in Italy, it has implemented 15 projects. www.cbmitalia.org

The awareness-raising campaign “Out of the Shadows, for the Right to See and Be Seen,” launched on the occasion of World Sight Day, aims to ensure eye care for almost 1 million people every year in countries of the Global South, thanks to prevention, treatment, and rehabilitation projects for visual impairments and inclusion in the community.

CBM Italia is part of CBM – Christian Blind Mission, an organization recognized by the WHO for its commitment for over 110 years to providing accessible and quality eye care. In the past year, CBM has implemented 391 projects in 44 countries worldwide, reaching 8.8 million beneficiaries.

There are over 2 billion people worldwide with vision problems. Half of these, over 1 billion people, are mainly concentrated in developing countries, where they lack access to eye care services. Yet 90% of all visual impairments are preventable and treatable. (source: World Report on Vision, WHO 2019).

Sources

• CBM Italia press release