Kampala, Uganda | THE INDEPENDENT | The Speaker of Parliament Rebecca Kadaga has demanded that the national census incorporates a category for persons with albinism so that their population size is adequately captured for proper planning.
Albinism is a genetic disorder where some people are born without the usual pigment or colour in their bodies. Their bodies are not able to make a normal amount of melanin, a chemical responsible for eye, skin, and hair colour.
Kadaga, who was speaking after a 4-kilometre charity walk to raise funds for the construction of a rehabilitation centre for persons living with Albinism, this morning, expressed dismay that the National Census data has no statistics on albinism.
Today’s walk marks the beginning of the Annual Parliament Week, a period in which the public engages the institution through departmental exhibitions, ‘Talk to Your MP Sessions’, Civil Society Debate and others. Parliament Week is held under the theme “Building a Strong Democracy in Uganda”.
Speaking to URN, Olive Namutebi, the Executive Director of African Albino Foundation said that they are struggling to obtain accurate data on albinism. She, however, noted that recent research carried out by the Albinism Umbrella found a sizeable number of albinos in Budaka, Butaleja, Bududa, Manafwa, Sironko, Soroti, Kamuli, Mayuge and Buyende in Eastern Uganda.
Altogether, the districts had 263 albinos’. Namutebi, however, noted that those who did not want to be counted were left out, implying that the numbers remain inaccurate.
Namutebi adds that out of the 263, it was ascertained that 75 percent of the people with albinism in Eastern Uganda had issues with their eyesight and only 2 percent had ever got an eye check-up, while a sizeable percentage did not know the cause of albinism.
“We found out that 68 percent of the persons with albinism did not know the cause of albinism. What does this mean; they are prone to believe anything, you know albinism has different myths surrounding it and because you do not know that it is a genetic condition inherited from both parents, this is the reason we are discriminated,” Namutebi said.
She equally appealed for a national census on the people living with albinism so that proper planning is carried especially for school-going children. She equally observed a need to increase awareness about albinism saying that many people are still not aware of the condition while in other areas people living with albinism continue to receive negativity from communities.
Meanwhile, Kadaga expressed disappointment about the continued taxes on sunburn protective gear, including sun creams, glasses and hats yet parliament resolved to scrap the taxes. This was after Namutebi noted that they still find a problem accessing sun creams due to taxes imposed by the Uganda Revenue Authority (URA). The cream protects persons with albinism from direct exposure to sunshine.
The Government Chief Whip Ruth Nankabirwa undertook to be an ambassador for Albinism in Cabinet so that favourable policies are developed.
The annual walk today raised 54.4 million Shillings as part of the five billion Shillings required for the construction of the planned Centre.