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.

October 1, 2019September 27, 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

August 20, 2019September 25, 2019

My Disability Does Not Mean I Am Broken

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

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 ... Read more

August 6, 2019September 11, 2019

I’m Not Letting My Fear of Surgery Control My Life

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

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 ... Read more

July 30, 2019September 11, 2019

Celebrating My Tattoo Milestone and a Blessing in Disguise

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

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 ... Read more

July 23, 2019September 5, 2019

Experiencing the Healing Effects of Medical Marijuana

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

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 ... Read more

June 25, 2019August 26, 2019

Book Review: ‘Strangers Assume My Girlfriend Is My Nurse’

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

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 ... Read more

June 18, 2019August 26, 2019

The Battle Between Mitochondrial Myopathy and Makeup

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

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 ... Read more

May 21, 2019May 17, 2019

Choosing the Right Dog Breed for My MD Lifestyle

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

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 ... Read more

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