Rare Life
June 27, 2022

‘Hi, I’m Ken With AMN’

Featured imageKen wears glasses and a beanie looks straight at the camera.
Listen to our audio conversation with a YouTuber impacted by ALD, or adrenoleukodystrophy.

Ken, also known as the Lotto King, is 37. He lives in central Pennsylvania, and he works full-time as a CAD draftsman for a modular home company. On YouTube, his subscribers know him as the Lotto King, and they’ve rallied around him as he both plays the slots and provides updates about his health. It was about five years ago that he was diagnosed with the rare disease adrenomyeloneuropathy, or AMN. 

Ken didn’t always know what AMN was. But he was well aware of ALD, or adrenoleukodystrophy, which can cause vision problems, deafness, difficulty swallowing, seizures, muscle weakness and dementia. His uncle had passed away from it, and his brother was actively struggling with the condition. Ken has adrenomyeloneuropathy, or AMN, the adult-onset form of ALD, which is milder and progresses more slowly.

Ken spoke with AllStripes for an audio conversation about coping mechanisms, mental health, falling while streaming and vital community support. A full transcript of the conversation is here.

If you have been impacted by
learn more about the benefits of joining AllStripes
by visiting our
research program page.