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.
When I first started my search for a possible partner in life, all I asked for was someone who’d love me and understand my rare condition, mitochondrial myopathy. I never imagined I’d find a person so determined to help me experience everything life had to offer. From the…
Let me make it clear that I am not opposed to questions about my disease and why I use a wheelchair. In fact, I encourage them. I mean, we might as well talk about the elephant in the room, right? By this point in my life, I’m basically an…
For several years, I’ve been feeling nauseated in the mornings after I eat breakfast. Whatever food item occupies my plate that morning — be it a chocolate chip muffin with a few strawberries or an apple with a side of yogurt — inevitably upsets my stomach. Fruits of any kind…
Last Wednesday, July 24, was the four-year anniversary of the day I got my first and only tattoo. One month earlier, I had turned 18 and graduated from high school. I was ready for a tattoo. (Courtesy of Leah Leilani) I wasn’t concerned about the needle, as…
Last year, I wrote about the unfortunate side effects of the medication Lyrica (pregabalin), which I’ve been taking for my fibromyalgia pain. For a while now, I’ve considered the option of switching out my medication for medical marijuana. I’m familiar with the use of cannabis for therapeutic…
Spoiler alert: This column contains stories from the book “Strangers Assume My Girlfriend Is My Nurse,” by Shane Burcaw. It was during one of my late night YouTube browsing sessions when I happened upon a video about an interabled couple whose names are Shane and Hannah. I was intrigued, seeing…
My early years in this world were spent being a girlie girl. Along with my stash of crowns and fake pearls were things like brightly colored nail polish and some mini lipsticks bought at Sally’s Beauty. Little did I know that as I grew older and my mitochondrial myopathy…
Prior to my diagnosis, my family spent much more time traveling than we do now. Even though I’ve never traveled outside California, I still have memories of long, scenic car rides across the state to our vacation destination. I miss those winter days spent in a snow-covered cabin in the…
As women, we reach a point growing up when we must enter the intimates section of the department store to begin shopping for bras. Finding a comfortable bra is an exercise of trial and error for every woman, and especially for those of us living with a chronic illness or…
My life with mitochondrial myopathy has been a roller coaster, but my dog Andre was always there to brighten my world. After days spent healing in a hospital room, I could look forward to coming home to my beloved Andre. If I was suffering through the flu and…
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