It all began a few years ago when I met Jane Waithera, a remarkable Kenyan woman with albinism who leads Positive Exposure, an NGO dedicated to supporting People with Albinism (PwAs). Through her, I learned about the incredible—and often heartbreaking—challenges faced by people with albinism in Kenya. Many live in deep poverty, excluded from society, and are at risk of abuse, rape, or even murder.

Because parents and teachers often lack knowledge about the condition, PwAs are frequently exposed to harmful sunlight, wear inadequate clothing, and receive no support for common visual impairments. Superstitions and myths surrounding albinism further isolate entire families, creating fear and stigma where understanding should be.

Recognizing this immense gap in awareness and support, we launched a website at the end of September 2019 to share reliable information about albinism—a genetic condition particularly prevalent in Kenya, Tanzania, and neighboring countries. The website was only the beginning. Together with Jane, we set out to build a community that empowers and connects people with albinism.

Just a few days later, I met two PwAs in Webuye, a small rural town in western Kenya. One woman told me:

“I earn 20 shillings a day—about 18 cents. I buy tomatoes in the morning and sell them. I’m a single mother with three children from three different men. Not good ones. Often we have nothing to eat. Then I give my children hot water to fill their stomachs.”

That same day, the local social welfare officer joined us. She explained,

“There are more than 40 PwAs and their families in this area alone that I know of. Right now, Kenya is conducting a national census—and for the first time, there’s a question about albinism. We’ll soon have clearer data on how many PwAs live in the country.”

Through our Making More Health initiative and with support from our local partner Ampath, we decided to take action—turning awareness into empowerment and compassion into concrete change.

It’s a situation that urgently needs change — now.

Thanks to Chris, our partner and social worker on the ground, the first steps have already been taken. Just a few days after our initial discussions, he organized the first Making More Health meeting with and for People with Albinism (PwAs).

Twenty-five participants attended. We covered their transport costs — otherwise, most wouldn’t have been able to come. We served some tea and snacks — nothing expensive, but it made a world of difference.

“We’ve started building structures to work with the local community — linking them to health and educational institutions and engaging through the media. We must change their situation,” Chris explained.

Also present was Dr. Lydia, a pharmacist and clinical officer specializing in skin health. She brought a bottle of sunscreen for each participant — the only available supply at the time. Government programs are supposed to provide three bottles per month, but stock shortages mean PwAs are often left without protection. Buying it privately costs 2,500 Kenyan shillings per bottle, far beyond what most can afford.

Building community, step by step

Through Making More Health, we plan to expand these efforts — providing smartphones, teaching digital literacy, and offering income-generation training. Strengthening local community structures is the first step. Regular meetings will follow, creating a lasting network of support and connection.

We’re also partnering closely with Jane’s Positive Exposure Kenya to link these initiatives with broader networks across the country — and eventually, beyond.

These individuals have endured enough hardship. What they need now is support that enables empowerment — the chance to stand on their own feet and shape their own future.