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.

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

October 29, 2019October 25, 2019

I Won’t Give Up My Positive Attitude for Others

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

Sometimes life with a chronic invisible illness can feel backward and upside down. As if anything that I do, whether positive or negative, could come back to bite me ... Read more

October 22, 2019October 18, 2019

Adjusting to Life Without My Gallbladder

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

“That’s right. You’ll be able to resume your regular diet after gallbladder removal.” My surgeon’s words ring in my ears as my television airs food commercials and I chomp ... Read more

October 1, 2019November 13, 2019

Honoring Serena Lawrence: How Her Life Changed Mine

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

In the summer of 2017, I received an email from a woman named Serena Lawrence. She had discovered me on Instagram, and had learned about my past ambassadorship with ... Read more

September 10, 2019September 5, 2019

My Asthma Flare Inspired Me to Buy a Vogmask

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

For most of my life, I’ve suffered from viral-induced asthma. While coughing and wheezing are often a constant with standard asthma, viral-induced asthma is triggered by infections such as ... Read more

September 3, 2019September 18, 2019

My Boyfriend Is Full of Ideas to Help Fight Inaccessibility

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

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 ... Read more

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