You, Me and MD - a Column by Leah Leilani

tiredness, single, ableism, angels, independence, crip camp, redefining success, introversion

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.

What I Use to Prevent Neck Pain

I’ve had bad posture my entire life. Growing up, I didn’t know why I always slouched so much. I just knew that I was comfortable that way. Years later, I realized that it’s because of the muscle weakness caused by mitochondrial myopathy. Last year was the first…

How to Buy a Wheelchair-accessible Van

For the first couple years of having mitochondrial myopathy, I used a manual wheelchair to get around. But when the time came to receive my first power wheelchair, my family realized that they would not be able to lift and fold it into the car. So, we started…

Growing Thicker Skin

It’s inevitable that people will treat you different when you’re in a wheelchair, whether that works in your favor or against it. It’s nice when people open doors for you or offer to help you with something. But then there are the stares. Being in a wheelchair while also…

Creating a Good Support System

A good support system is crucial to getting through the endless roller coaster that is life, whether or not you have an illness. Without the love and support of my friends and family, I don’t know whom or where I’d be. Creating a good support system can take…

Being Organized for Doctor’s Appointments

It can be tough to know how to stay organized for doctor’s appointments. It’s virtually impossible without the proper advice and guidance. You may have questions for your doctor whirling around in your head about the seemingly endless list of medications. It can be overwhelming. For the past…

17 Things I Learned in 2017

Well, everyone, it is officially 2018! A new year means new beginnings, new opportunities and more chances to live the life we want. I will be honest and say that, for me, 2017 had ups and downs. There were struggles and hardships that forced me to learn some…

Staying Warm Even when It’s Rough Outside

When people ask me what my favorite season is I always say winter. I find that it’s much easier to warm up your body than to cool it down. Many of you probably know the struggle that comes with regulating body temperature when constantly sitting. It’s harder for…

How to Maintain Your Hobbies

I’ve been drawing and sketching ever since I could pick up a marker. For me, drawing isn’t just a hobby or a way to pass time, it’s a passion. It’s a part of me. Although I have taken art classes, I’ve never actually been taught how to…