Posts by: Leah Leilani

Leah Leilani

My name is Leah. I'm 20 years old and I was diagnosed at the age of nine with a a rare form of Muscular Dystrophy called Mitochondrial Myopathy. I'm a former MDA Regional Ambassador and have recently started my own blog. My disease affects my energy levels and I can not get through the day without my wheelchair and taking naps.

March 17, 2020March 16, 2020

Redefining Success While Living with a Chronic Illness

columns, You, Me and MD - a Column by Leah Leilani

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 ... Read more

March 10, 2020March 6, 2020

My Favorite Moments at This Year’s LA Abilities Expo

columns, You, Me and MD - a Column by Leah Leilani

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 ... Read more

February 25, 2020February 21, 2020

I Advocate for Disability Rights with Apparel and Accessories

columns, You, Me and MD - a Column by Leah Leilani

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 ... Read more

February 4, 2020February 3, 2020

Difficulties Strengthen Interabled Relationships

columns, You, Me and MD - a Column by Leah Leilani

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. ... Read more

January 21, 2020January 17, 2020

Joining a Support Group Can Make a Difference

columns, You, Me and MD - a Column by Leah Leilani

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 ... Read more

January 14, 2020January 10, 2020

Regaining Control of My Life with The Happy Planner

columns, You, Me and MD - a Column by Leah Leilani

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 ... Read more

December 17, 2019December 13, 2019

Gift Ideas for Your Loved One with MD

columns, You, Me and MD - a Column by Leah Leilani

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 ... Read more

December 10, 2019December 6, 2019

Finding Relief for My Dry, Flaky Winter Skin

columns, You, Me and MD - a Column by Leah Leilani

A recent cold front has swept through the U.S. As the snow and rain arrive, they bring problems for my skin. The epidermis, the outermost layer, becomes dry, cracked, ... Read more

November 19, 2019November 18, 2019

Improving My Digestion with Enzyme Supplements

columns, You, Me and MD - a Column by Leah Leilani

It’s over a month since my gallbladder surgery, and I couldn’t be happier with my healing process. I previously wrote about adjusting to life after gallbladder removal and mentioned ... Read more

November 11, 2019November 8, 2019

Attack of the Bloodthirsty Mosquitoes

columns, You, Me and MD - a Column by Leah Leilani

Fall and winter have always been my favorite seasons. I eagerly await the cooler weather by prematurely washing my sweaters and drinking warm beverages. This year, I’m particularly excited ... Read more

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