ROMA – There is a disease that is putting the lives of nine thousand children in the South of the world at risk. The source is theAmerican Academy of Ophthalmology: it is called retinoblastoma and is a malignant tumor of the retina widespread in childhood. It happened to Dot, a 9-year-old girl, in a rural village in South Sudan. If not diagnosed in time, it leads to vision loss and, in severe cases, death.
Dot’s story. When the mother noticed a swelling in her daughter’s eye, “the elders of our community – explains the woman – said it wasn’t serious. They tried some herbal remedies, but it didn’t improve. At that point I told them to take her to the city.” After traveling all night, the little girl arrives at the BEC, the only eye care center here, they examined her, and her diagnosis was: eye cancer. The doctors told me that she had to be operated on at Ruharo, and so we left.”
Il retinoblastoma. “It is the intraocular malignant tumor that most frequently affects children and their own
development occurs starting from retinoblasts, i.e. the precursors of retinal cells”, explains a Solidarity World Republic one of the leading international experts in retinal pathologies, Dr. Fabio Patelli. “The retina is the nervous tissue found inside the eye and which has the task of transforming light into an electrical impulse which will then be processed by the cerebral cortex. It may happen that there is a failure to differentiate the retinoblasts into mature cells and that these continue to multiply, giving rise to retinoblastoma. This malignant tumor occurs in children under 2-3 years of age when it is unilateral, while if bilateral the age of onset drops to approximately one year, with no differences between males and females; the incidence is one case every 20 thousand births for a total of approximately 25 new cases per year in Italy”.
How the disease arises. “From a pathogenetic point of view – explains Dr. Patelli – the triggering factor is a mutation in the Rb1 gene. Tumors affecting only one eye are the most frequent and usually represent a sporadic form, while those involving both eyes are hereditary and caused by a mutation transmitted by parents. Since it is a genetically based malignant tumor, the risk increases if there are already other cases in the family. A genetic test is available and is recommended to all patients affected by retinoblastoma and possibly to their parents.”
The journey of hope. Dealing with such a disease in Uganda is much more complex than dealing with it in Italy. And so David and Dot set off traveling 900 km to get from Juba to Mbarara, in the western part of Uganda, where the Ruharo Mission Hospital is located, which is a point of reference for the treatment of eye cancer in this part of the country. ‘Africa: children from the Democratic Republic of Congo, South Sudan, Rwanda, Burundi, Tanzania, Kenya and Somalia come for treatment here. “Dot was immediately welcomed by the doctors who examined her, operated on her and gave her 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 won her battle!”.
Il Ruharo Mission Hospital. E’ CBM (Christian Blind Mission, an international organization recognized by the WHO for its commitment for over 110 years in guaranteeing accessible and quality eye care) to support, since 2006, the Ruharo Mission Hospital by ensuring immediate visits and diagnoses, surgical interventions, hospitalizations and long-term treatments to 175 children affected by retinoblastoma every year. In addition to the important prevention and treatment program for retinoblastoma, CBM also supports families from the most remote and rural areas during their hospital stay by covering the costs of meals, transport costs for the many visits, consultancy interventions and psychosocial support to guarantee young patients to follow the treatment program to the end which they would otherwise be forced to abandon due to poverty.
The importance of diagnosis. As often happens in sub-Saharan Africa, when Dot arrived at hospital the tumor was in an advanced stage and this caused her to lose her eye. Despite the disease that struck her, Dot is well and her story with a happy ending represents hope for the many children affected by retinoblastoma: “Having only one eye does not mean being finished. The next time you see her, if she succeeds, she will be an educated child. I will take her to a nice school, she will study, she will learn with children of different ethnic groups, ”explains her mother.
But how is this disease recognized? “The symptoms can be very varied and essentially depend on the stage of the disease and the age of the children,” explains Fabio Patelli. “The typical sign of retinoblastoma is leukocoria, which is an abnormal whitish reflex across the pupil when the eye is illuminated with a light source, while the normal reflex is defined as “red”. The evaluation of the red reflex is a screening test that is usually carried out by neonatologists in the first days of the baby’s life; However, in the case of small or peripheral tumors, this test can be falsely negative. As regards prevention, it is advisable to have an eye check-up within 6 months of life, to be repeated at 2-3 years if it appears to be normal. In case of a positive family history of the disease, it is advisable to carry out an ophthalmological evaluation in the first months of life. If there is suspicion of retinoblastoma, the patient should be immediately referred to a reference centre.”
Social reintegration. CBM’s work is also aimed at raising awareness in communities in order to change the perception of the disease, and ensure that children with vision problems are not only examined immediately but accepted by the community itself. In the last year (2022) CBM implemented 43 projects in 11 countries in Africa, Asia and Latin America, reaching 976 thousand people; in Italy it has implemented 15 projects. In the last year CBM has implemented 391 projects in 44 countries around the world, reaching 8.8 million beneficiaries.
The possibility of healing exists. There are over 2 billion people in the world with vision problems. Half of these, i.e. over 1 billion people, mainly concentrated in developing countries, do not have the possibility of accessing eye care services. Yet 90% of all vision problems are preventable and treatable. “Once the diagnosis is confirmed – explains Dr. Patelli – the tumor is staged: in 5 stages from 0 to IV, based on theInternational Retinoblastoma Staging Systemor with letters from A to E according to l’International Classification of Retinoblastoma. The treatment of retinoblastoma is usually managed by a multidisciplinary team, which also includes the ophthalmologist, in order to treat the pathology from a systemic as well as ocular point of view. The therapeutic options are varied and mainly depend on the stage of the disease and any comorbidities of the patient. It is possible to carry out cycles of systemic chemotherapy, intra-arterial chemotherapy, intra-vitreal therapy; furthermore, the effect of these drugs can be accompanied by the use of focal treatments such as photocoagulation of the tumor, cryotherapy, radiotherapy or brachytherapy. Removal of the eyeball, or enucleation, is reserved for cases that are advanced or resistant to the therapies listed above.
High cure rates. The cure rate and therefore survival rate in children who receive treatments for non-spread cancer is higher than 90%, while the prognosis is poor in case of failure to treat retinoblastoma” The awareness campaign. It is called “Out of the shadow, for the right to see and be seen” and aims to guarantee eye care to almost a million people every year in the countries of the South of the world, thanks to projects for the prevention, treatment and rehabilitation of visual disabilities and inclusion in the community. In the last year CBM has implemented 391 projects in 44 countries around the world, reaching 8.8 million beneficiaries.
How to help the awareness campaign. To help CBM just respond to the appeal and participate in the “Out of the shadows” awareness campaign. According to the WHO, there are over two billion people in the world with vision problems. Half of these, i.e. over a billion people, mainly concentrated in developing countries, do not have the possibility of accessing eye care services. Yet 90% of all vision problems are preventable and treatable.
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– 2024-04-05 21:25:05
