•Albinism is a rare, non-contagious, genetically inherited disease occurs in all racial and ethnic groups throughout the world
•An online-gaming tool has also been developed and will be used to test people’s knowledge about Albinism
Kenyans with albinism and their families are set to benefit from a global training and awareness programme unveiled by a pharmaceutical company.
The programme by Boehringer Ingelheim seeks to safeguard persons with albinism from discrimination and raise awareness in their environment.
It also hopes to create an inclusive society that integrates and supports people with albinism by demystifying myths about the condition.
The programme will educate people with albinism, their families, friends and health care providers on the importance of protecting those affected by the condition.
It will be implemented in close collaboration with key partners - Ampath, Golden Age Albinism Support Group (GAASP) and Positive Exposure, all based in Kenya.
The training which will be rolled out in Western Kenya will also focus on health and safety conditions for people living with albinism in the region while emphasizing on the importance of the community to embrace and protect those with the condition in their environment.
Jane Waithera, the founder of Positive Exposure says a comprehensive programme has been designed in collaboration with Boehringer Ingelheim and the two organisations will coordinate the distribution of the training material to communities in the region.
The training is part of Making More Health an initiative by Boehringer Ingelheim and Ashoka that seeks to create healthier communities and sustainable ecosystems of change through social innovation.
MMH has committed resources in rural Kenya to create a fully inclusive society that supports the wellbeing of people with albinism.
“Our goal is to create an inclusive society that integrates and supports people with albinism by demystifying myths about the condition through leveraging education and raising public awareness, said Manuela Pestore, Global Lead for Making More Health.
In a first step, a binder that details information on skin and eye care for persons with albinism will be shared with educators, students and health care personnel to train people with albinism and their families.
It also shares knowledge on how to create a conducive learning environment for students and how to avoid discrimination for people with albinism.
An online-gaming tool has also been developed and will be used to test people’s knowledge about Albinism.
Questions are structured in 3 chapters: ‘Worth Knowing’ contain general topics about Albinism, ‘Proper Health Care’ and questions about ‘The Role of Communities and Schools.
Albinism is a rare, non-contagious, genetically inherited disease occurs in all racial and ethnic groups throughout the world.
Persons with albinism are regular people who have a decreased amount of melanin in their hair, skin and eyes.
People with albinism therefore are vulnerable to sun exposure and sensitive to bright light.
There is a lot of superstition with many negative impacts on people with albinism including attacks, amputation and murder.
The knowledge level on albinism and the genetic conditions is very low in the public. Officially, around 3,000 are officially are registered, but the estimate of the total range is greater than 15,000.