It started some years back when Jane became my friend. Jane is a person with albinism, Kenyan and leads Positive Exposure, a NGO that started recently to support People with albinism (PwAs). I learned about the challenges these people encounter in their life. Incredible and horrible. Often extremely poor, excluded from society, often raped or even killed. As parents and teachers often don’t know what to do and what to avoid , PwAs often are exposed to sun, don’t put the right clothes, teachers don’t recognize the short sight, superstition and myth provoke many critical situations for whole families.
There is a huge lack of knowledge and a huge need to build a community
At the end of September 2019 we launched a website to share more knowledge about albinism, a genetic condition that in Kenya, Tansania and the countries around is particularly high. The website is just a starting point. Together with Jane we will help to build a community to empower them.
A few days later I have met two PWAs in Webuye, a rural town in Westkenya.
“We gain 20 schilling a day (ca18 Cent in EUR) I buy tomatoes in the morning and sell them. I’m a single mother. I have three children. From three different men, not good ones… often I have nothing to eat. Then I give some hot water to my children”, the woman explains.
The social welfare officer is there that day. She knows about the PWAs: “There are more than 40 PwAs and their families here around I’m aware of… there is a national census in Kenya ongoing the first time also a question of being affected by this genetic condition is included. No one knows so far the exact number of how many PwAs are living in Kenya actually. We will see soon,” she adds.
With our Making More Health initiative and our local partner from Ampath we take action
It’s a situation that needs change. Immediately !
Thanks Chris for taking the first step – we can do it
It’s only a few days later when Chris, our partner and social worker on the ground, organizes a first Making More Health meeting with and for PwAs.
25 people attended. We pay the transport fares, otherwise they could not have come. They can’t pay the bus. Some tea, some snacks. Nothing really big in terms of money. But with a huge impact.
“We have put measures to work with the community here – through structures, connecting them to health institutions, and learning institutions as well as through media. We need to change their situation,” explains Chris.
On board was also Dr. Lydia, a pharmacist in charge, and clinical officer for skin. She brought also 1 bottle of sunscreen for everyone. That one bottle is available at the moment. Normally, the government should give three per month. But they do not have enough bottles. So PwAs should buy …It costs 2500 Schilling per bottle.
Community building at a larger scale
With Making More Health we will work also on providing smart phones, and also teach on digital literacy. Income generation trainings will follow. The local community building is the first step. We will organize regularly meetings. From here now we connect also with the Jane’s Positive Exposure Kenya NGO on albinism and will share also within the networks in all other parts where we engage.
These people have suffered enough, they need some support – in such a way that they can empower themselves!