Columns

As this column is published, it’s the eve of the fourth anniversary of my brother Isaac‘s death. He passed away on Dec. 7, 2019, from heart disease related to his Duchenne muscular dystrophy (DMD), which I have, too. I feel it’s significant, even rare, that someone with…

Note: This column describes the author’s sons’ experiences with a trial dose of Translarna (ataluren) in the U.S. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I’m a mother to three sons with Duchenne muscular dystrophy (DMD): Max, 18,…

I was diagnosed with facioscapulohumeral muscular dystrophy (FSHD) at age 14, when I was a freshman in high school. But even before that, I had begun adapting to my physical challenges. My FSHD journey actually started with a counselor from the Pennsylvania Office of Vocational Rehabilitation who visited…

Shalom Lim, who lives with Duchenne muscular dystrophy, celebrates a relationship milestone and affirms that waiting for and finding true love is worth the effort.

How does Duchenne muscular dystrophy (DMD) affect me as a mom? Am I numb? Have I accepted it? Has DMD killed a piece of my heart? Will it keep taking parts of me? These questions have been weighing on my heart, but it’s been hard to put them into…

Patient columnist Robin Stemple has many people who assist him, particularly his wife and daughter, and he is grateful for everyone who gives him help on a daily basis, often without him even having to ask.

It was almost midnight on a Friday night, and for hours, my husband, Jason, and I hadn’t seen or heard from our oldest son, Max, who has Duchenne muscular dystrophy (DMD). In most situations, we would’ve been out of our minds with fear. But that night, we were smiling.

Late last month I turned 28 years old, the age my brother, Isaac, was when he passed away from Duchenne muscular dystrophy (DMD). I have the same disease, and it’s put me through many exhausting battles. But each time, I’ve emerged stronger. In fact, I graduated with a…

Siblings are the greatest thing I have given my children. They are built-in friends who share the earliest memories, parents, and everything else. As my kids have gotten older, they have many “remember that time” stories they love to laugh about as they reminisce. Duchenne muscular dystrophy (DMD)…

I’m looking out our patio doors at our backyard. I can hear the not-so-gentle Nebraska gales blowing around the wind chimes this morning as I watch leaves drift through the air. I’ve just come in from a fast-paced walk; sweat is sticking to my neck, and my heart rate is…