Leah Leilani,  —

Leah is a Southern California-based patient writer. She’s been an active member of the muscular dystrophy community since her regional ambassadorship with the MDA beginning at the age of 10 after her diagnosis of a rare neuromuscular disease, mitochondrial myopathy (Mito). Leah advocates for those with disabilities and promotes an understanding of her condition by evoking a positive outlook upon the obstacles she faces. Leah’s work doesn’t just stop at her column: she also doubles as a co-moderator on the MD News Forums. Away from her jobs, Leah is known among family and friends for her artistic creativity and outgoing personality.

Articles by Leah Leilani

Finding Doctors Who Understand Your Disease

In life, there are good and bad versions of everything. When it comes to doctors, some get lost in their egos or refrain from showing emotion in patient relations. Unfortunately, I have dealt with many of those types of doctors. Luckily, I now have wonderful physicians who help…

Seeing Both Sides of the Plastic Straw Controversy

A few years ago, if you had asked me what it means to be eco-friendly, I would have given you the average answer: “Turning off your lights when you’re not using them and conserving water when possible. Being eco-friendly also includes recycling things made of plastic, glass, and…

Managing Body Temperature with Heat Intolerance

As you all know, summer is upon us, and that means trying our best to stay cool. Here in Southern California, the June gloom is almost gone and that familiar, nostalgic feeling of summer has finally come. Pretty soon, everyone will be blasting their air conditioning and licking…

Planning My Summer with Both Fun and Reality in Mind

As you may know if you’ve read my columns before, my form of muscular dystrophy is called mitochondrial myopathy. It renders my body unable to produce enough energy to function properly. Although I’m homeschooled, which reduces the hours I spend learning, it still takes up valuable time and energy.

Dating with a Disability: Part 2

Second in a series. Read the first here. It’s no mystery that romantic relationships take effort. They’re not always full of sunshine and flowers. They require good communication, patience, trust, and understanding. That’s not easy even for the regular able-bodied couple. If you or your partner…