It is undeniable that the coronavirus pandemic has affected many aspects of life. Along with establishing new norms for work, school, and social interaction, the pandemic has forced romantic relationships to undergo alterations. “When can I see you again?” my boyfriend, Will, asked for the…
You, Me and MD — 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.
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Dear readers, This will be my last column for Muscular Dystrophy News. I want to thank you for following along with “You, Me, and MD” and for supporting me. You are the reason I write, and I hope I have made some difference in your…
Leah Leilani -- You, Me and MD
Positivity is a characteristic that I naturally possess. I seldom struggle to find the bright side of situations. Although this attribute has saved me innumerous times from acquiring a negative disposition, I have not been completely unscathed by depression and anxiety. My mental illness began early…
I’ve never considered myself to be insecure about my disability. My use of a mobility aid has never dulled my social butterfly persona, except on a few occasions when I’ve communed with other people with disabilities and had to face the reality of my own disease. …
Netflix’s new documentary “Crip Camp” transports viewers to the peak era of peace-preaching hippies and civil rights activists. But amid these revolutions, another minority group struggled to find belonging: the disability community. To further their cause, Camp Jened’s hippie staff dedicated themselves to treating people with disabilities…
In the days when I still attended school, I was deemed an extrovert by my teachers and school officials. Never did I falter in putting myself “out there.” I was best known as the girl who won the talent show by belting out a Dixie Chicks song while…
I never have an answer to the questions, “Where do you see yourself in five to 10 years?” or “What are your future goals?” Mitochondrial myopathy is a rare and little understood disease, meaning I don’t know what lies ahead with my health. This can…
On Saturday morning, Feb. 22, I awoke with excited anticipation of the day ahead. That day, I attended the Los Angeles Abilities Expo for the second year in a row. Attending the 2020 LA Abilities Expo was a different experience this year simply because I…
Many years ago, I wore a green wristband adorned with the words “energy for life.” This phrase helped me to promote awareness about my disease, mitochondrial myopathy. I wore the wristband every day until one day it disappeared. I scoured my room looking for my beloved accessory, but came…
The best relationships aren’t full of luxurious vacations and daily smiles and laughter. Long-lasting couples have been to hell and back together, growing closer and stronger through the storms. Ups and downs because of illness and vulnerabilities, along with the need for extra support, can test an interabled relationship. But…
As a kid, I found it difficult to bond with other children with muscular dystrophy (MD). As a young teen, I often compared myself to others — including those living with MD. The invisibility of my disease often made me feel like an outcast. The rarity of my type of…
Most people with a chronic illness inevitably learn to expect the unexpected with their health. No matter how meticulously I attempt to plan around my body’s needs, mitochondrial myopathy sometimes has a different agenda. I lose control over my body and feel as though I must bend to the…
Finding the perfect Christmas gift requires listening intently to the recipient’s wants and needs. This year, the social media team at Muscular Dystrophy News Today asked followers what would be on their wish lists to make their lives easier and more comfortable. These recommendations are sure to put a…
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