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.

April 2, 2019April 1, 2019

Looking at the Complexities of Mitochondrial Myopathy and Autism

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

Initial misdiagnosis is a common experience of those living with chronic illnesses. Many diseases have similar characteristics, and during the process of elimination, patients can receive an incorrect diagnosis. ... Read more

March 19, 2019April 5, 2019

My Birth Control Injections Have Restored My Quality of Life

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

The time when a girl’s body matures into that of a young woman isn’t how it’s portrayed in the movies — at least it wasn’t for me. I didn’t ... Read more

March 12, 2019March 22, 2019

My First Time Attending the LA Abilities Expo

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

A few weeks ago, I attended the Los Angeles Abilities Expo for the first time. Because I am now a moderator for the Muscular Dystrophy News Forums, I thought it would be ... Read more

March 5, 2019March 4, 2019

Join Us in the New Muscular Dystrophy News Forums

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

I received my mitochondrial myopathy diagnosis 13 years ago. I became involved with the Muscular Dystrophy Association (MDA) soon afterward. The organization is known for its Labor Day telethons previously ... Read more

February 26, 2019March 12, 2019

What Teachers Should Know About Students with Disabilities

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

Teachers must educate classes full of rambunctious, bored kids while trying to keep them engaged and quiet. Having a student with disabilities can add a whole new layer of ... Read more

February 12, 2019February 20, 2019

Tips to Alleviate Symptoms of Constipation

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

Managing one’s health while living with a disability requires much more than regular trips to the doctor and excessive amounts of medications. For those with disabilities, daily life can ... Read more

February 5, 2019February 12, 2019

I Can’t Do Everything, and That’s OK

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

A couple weeks ago, a blogger with mitochondrial myopathy posted an interesting piece of advice in her Instagram story: “Instead of telling disabled kids ‘You can do anything you want ... Read more

January 29, 2019January 28, 2019

Finding the Perfect Wheelchair Blanket

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

Many YouTubers create meaningful content about their lives with disability and chronic illness. By showing what it’s like to live with physical obstacles, they create awareness and inspire others ... Read more

January 22, 2019March 7, 2019

Seeing Both Sides of ‘The Upside’

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

Spoiler alert: This column reveals some plot details of the newly released film “The Upside.” All over the world, members of the disabled community are discussing the recently released movie ... Read more

January 15, 2019March 7, 2019

I’ve Learned How to Deal with Judgment About My Disease

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

In this day and age, when we have so much awareness about diversity, it surprises me how judgmental people can still be. It was rare 60 years ago to ... Read more

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