• Sat. Apr 20th, 2024

Medical care for people with albinism, a major challenge in Burundi


Feb 28, 2024

BUJUMBURA, February 28th (ABP) – People with albinism often face social, medical and educational challenges due to their unique physical appearance and the stigma associated with their body conditions.

In Burundi, like in many other African countries, people with albinism face particular challenges due to deep-rooted cultural beliefs and prejudices. Skin cancer, social marginalization, physical violence (killing) and eye disease constitute a real threat to the daily life of Burundian albinos. The risks of developing skin cancer and skin conditions are high in this category of people who require more specific assistance.

According to Dr. Doriane Sabushimike, specialist dermatologist and consultant at the Regional Dermatology Training Center (RDTC) in Moshi, Tanzania, based in Burundi and Tanzania, she told a check by ABP on Monday February 12, 2024 during an interview that albinism is a genetic condition, characterized by a reduction or absence of melanin, pigment-producing cells generally present in the skin, eyes and hair. As a result, people with albinism have light skin and hair, and often suffer from severe visual impairment. According to her, the main role of melanin is to protect our body against damage that can result from the sun. As a result, she continued to explain, people living with albinism (PLA) are particularly susceptible to sunburn, premature skin aging, decreased skin elasticity and a high risk of skin cancer.

According to that specialist in Dermatology, estimating the prevalence of albinism in Burundi is difficult due to the absence of comprehensive epidemiological studies focused on this specific category of people. However, she said, statistics provided in 2013 by the association of people living with albinism in Burundi “Albinos Sans Frontière (ASF)”, people with albinism were estimated at 1,200. “Suppose that this figure would have doubled in the 10 years,” she thought.

She noted that in Africa, the prevalence of albinism ranges from 1 in 2,500 people to 1 in 10,000 people, with higher rates observed in Burundi’s neighboring country Tanzania. This gap can be attributed to the greater number of studies conducted on this category of people compared to other East African countries, she said.

Regarding the specific needs of people with albinism in terms of medical care and social support in Burundi, Dr. Sabushimike said that an albinism awareness program, specifically aimed at PWA in Burundi, based at the Military Hospital de Kamenge, (HMK) was launched. The latter mainly aims to meet the medical needs of albinos and provide them with essential social support. It also aims at offering them regular and free screenings, skin cancer treatment and distribution of sun protection, she revealed.

According to Dr. Sabushimike, during the first clinical sessions under this program, a worrying trend was observed: “Many PWA were not using sun protection devices or were using inappropriate devices. We have encountered cases of people with very advanced skin cancer, seeing the urgent need for education about their condition and awareness about the importance of using sun protection and seeking medical care in a timely manner,” she said.

The specialist also believes that given the financial constraints among many PWA, there is a significant demand for free distribution of sun protection devices in order to alleviate this burden. Regarding the resources and services available to people with albinism in Burundi, in terms of medical care, education and social support, Dr. Sabushimike says that there is a long way to go but she remains confident and optimistic about improving the situation. “Regarding medical support, the recently launched program mentioned above aims to offer this category of people education, screening, treatment and distribution of sun protection kits. However, the success of these efforts requires the support of relevant government agencies such as the Ministry responsible for Health and the Ministry in charge of Solidarity, as well as governmental and non-governmental humanitarian organizations. “It is crucial to highlight the urgency of this support as people with albinism continue to succumb to preventable forms of cancer,” she noted.

Dr. Sabushimike provides pieces of advice to families and communities to effectively support people with albinism. “Albinism is a non-contagious disease, it does not prevent albinos from achieving what their unaffected brothers and sisters can do. Discrimination against people with albinism should have no place in educational institutions or workplaces. The government must provide unwavering support to those affected, advocating for their inclusion in all spheres of society,” she stressed. She further considers that this support consists in particular of facilitating access to the necessary medical and social assistance, by working in close collaboration with health professionals specialized and experienced in the complications linked to albinism.

ASF is concerned about the situation of people living with albinism

In a interview given to the check by ABP on February 9, 2024, the legal representative of the ASF, Mr. Anicet Bangirinama, pointed out that based on current statistics, the number of people with albinism is 1,265 out of 12,300,000 of the total Burundian population (estimate). He indicates that from the creation of the ASF, its main objective was to bring together, in a single family, all people with albinism in Burundi to better supervise them. He noted that health, education, socio-economic integration and security are the main concerns of the ASF.

 The legal representative of the ASF, Mr. Anicet Bangirinama

Bangirinama affirms that safety is the most relevant concern compared to the others: “Most albinos are afraid of travelling due to the insecurity they face on a daily basis,” he deplores. Safety is also a major concern among many others: “People with albinism are mostly attacked by skin cancer as a result of the sun’s rays to which they are regularly exposed,” he confided. In addition, the stigmatization on the part of certain parents towards their albino children and those around them in certain localities which is still observed, the lack of financial and material support constitute the challenges that the ASF faces. According to Bangirinama, since 2008 to this moment, 17 albinos have been brutally killed. Added to these are 13 others who were victims of illnesses such as cancer during the same period.

Burundian albinos are often victims of rituals linked to witchcraft

In 2022, on a certain Saturday, a little albino by the name of Abdul, aged four, was kidnapped in broad daylight by a group of three criminals who were on a taxi, while he was playing with other children in the entourage in the Kinama quarter, on the outskirts of the city of Bujumbura, the economic capital of Burundi. His captors took the road to Cankuzo province, located about 240 km from Bujumbura, where they killed and dismembered the little boy. Abdul’s tormentors brutally killed him, then cut off his arms and legs, and divided his bones among themselves. After this despicable act, Abdoul’s remains were thrown the next day (Sunday) in a forest, in Kigamba commune. A child who was herding cattle saw the criminals and raised the alarm, which led to the arrest of two of them, each in possession of the child’s bones in a bag.

In some parts of sub-Saharan Africa, including Burundi, albinos are sought after and killed, and have their limbs and organs removed to be used for rituals linked to witchcraft believed to bring wealth and opportunity.

Faced with this situation, the legal representative of the ASF asks the authorities to increase sanctions for crimes committed against albinos and to strengthen their protection throughout the national territory. “We call on the government of the Republic of Burundi, in particular the Ministry of Justice, to severely punish those guilty of these despicable acts, once caught. The government should take security measures, from the village, to better protect people with albinism,” he reacted. According to Bangirinama, this barbarity plunges people with albinism and their families into permanent fear.

Albinos are afraid of being kidnapped and killed for their organs and limbs

Albinos live in constant fear of being kidnapped and killed for their organs. This situation has a considerable impact on their daily lives, as many of them are unable to work or go to school, due to the high risk of attacks.

A family living in Ruziba, in the locality of Gitaramuka I on the outskirts of the city of Bujumbura, illustrates this dramatic situation experienced on a daily basis by people with albinism and their families. Philbert Ndayisenga (husband: 42 years old) and Ange Nizeyimana (35 years old) gave birth to 5 children, three of whom are albinos. Délicia Manirambona (13 years old), Eliane Ndereyimana (11 years old) and Nielle Iteriteka (9 years old) study respectively in the 5th year, 4th year and 3rd of basic education. They all attend the Ruziba II basic school. Ndayisenga, the father of those children, told the check by ABP on Sunday February 4, 2024 that he still lives in instability: “In the evening, I do not sleep. I watch over my children because I fear that criminals will kidnap them,” he reveals. He indicates that during the day, when those children are at school, he feels comfortable because he is sure that they are protected: “When they are at school, I remain confident about their protection. But when they are back home, I must constantly ensure their safety by preventing them from straying from the family roof. During the night, I often sleep out in the open,” he explained. This situation disrupts my daily activities (field and other income-generating activities), he said, indicating that this puts the family in financial precariousness.

      From left to right, Nielle Iteriteka (9 years old), Délicia Manirambona (13 years old) and Eliane Ndereyimana (11 years old)

However, Ndayisenga recognizes the solidarity that characterizes his neighbors: “My neighbors are all mobilized for the safety of my children. When a foreigner enters our locality and is suspected, they are closely monitored because they are already aware that my albino children are vulnerable and require special protection,” he said. Additionally, lack of awareness and education about albinism can lead to increased social stigma : “Neighborhood children are not at all aware that my albino children are like them and that they must live together and play together. This is why, sometimes, they are singled out and stigmatized by certain children in the neighborhood because of their skin, which often creates fights among them,” he pointed out. According to Ndayisenga, his albino children face many challenges when it comes to finding suitable products to protect themselves from the sun. Due to their genetic condition which makes them more sensitive to ultraviolet (UV) rays, those albino children are in crucial need of sunscreen, special clothing and protective accessories. However, he continued to reveal, those products are often rare on the local market and can be expensive, making it difficult for those children to access adequate protection against the harmful effects from the sun.

                                                                                              By Jean de Dieu Ndikumasabo