By Olive Namutebi, The Executive Director, Albinim Umbrella
Olive described Albinism as a genetic condition that was manifested at birth where a person completely lacked or partially lacked melanin with evidence of pale or ash grey eyes, no colour in hair and the skin.
The Albinism Umbrella was a voice for the albinism community in Uganda. It was estimated that over 1:20,000 persons in the world lived with some form of albinism. One person in every 17,000 in Europe and America lived with albinism while one in every 5,000 for the sub Saharan Africa. Approximately 20,000 persons in Uganda were living with albinism in Uganda. Persons living with albinism (PWAs) faced challenges like stigma, discrimination, low levels of education, poverty, ignorance about their health conditions and limited access to legal services. PWAs were unique that their skins were easily affected by sun rays which lead to skin cancer and their eye sight was also very poor.
Albinism Umbrella had and was creating awareness through the media to reduce ignorance about the condition, sensitize the community to overcome discrimination among employers, schools and general public.
We were advocating for inclusion in development programs as a way to alleviate poverty in this community. We envision an albinism center to show case our capabilities. This would be a one stop center on issue of albinism and development. It would have a health facility, training center, housing facility, data center, farming land and administration block.
Efforts towards this dream were started by a fundraising walk spearheaded by the Speaker of Parliament on 5th February 2017. It was estimated to cost five billion shillings.
The albinism community needed sun screen to protect their vulnerable skins which was not readily available Preliminary research had been done to locally manufacture the crèmes There a need to go through the scientific rigor and certification of this essential drug for the albinos.
What help was needed?
- Research – There was no credible data bout albinism in the country and research was needed to have this important tool in planning for this constituency.
- Local sunscreen production. These were essential drug for the albino community which were very expensive and scarce in the country. Local production would make them available and more affordable
- Empowerment program for PWAs and their care givers
- Sensitization for both the community leaders and PWAs
- Support the construction of an albinism center
- Sponsor a child education with $300 a year.