Duchenne: Shalom's Lifelong Partner-in-Crime - a Column by Shalom Lim Ern Rong

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…

On Sept. 2, the Muscular Dystrophy Association (Singapore) (MDAS) held its annual Go the Dystance carnival at One Punggol, a community hub that houses the Punggol Regional Library. The event is typically held between SMA Awareness Month in August and World Duchenne Awareness Day on Sept. 7.

Aug. 14 isn’t just another day for my family. This year, our conversations were imbued with heartfelt remembrance as we gathered around the dinner table. We celebrated the birthday of my brother, Isaac, even though he was no longer with us physically. Isaac passed away due to heart…

While writing this today, I’m marveling at how swiftly the passage of time has occurred. It’s been almost a year since I published my first column for Muscular Dystrophy News Today! In my debut column, I documented how, after more than two decades of battling Duchenne…

After 17 years, Shalom Lin is preparing to say good-bye to his caregiver, Glenda. Goodbyes are always painful but often necessary. Nothing lasts forever, so we must enjoy what we have with the people we love, he writes.

One cozy night last September, my parents and I relaxed in the living room after dinner. My father turned to me and asked for a movie recommendation. It’d been awhile since we’d done this — our cherished family tradition of watching movies together on weekend evenings. In 2019, we lost…

Readers of my column are familiar with my Duchenne muscular dystrophy (DMD) story, which began with my diagnosis in February 1996. My older brother, Isaac, was diagnosed with DMD at birth in August 1991. My family’s DMD story, however, dates back four decades from then, to 1951,…

This month, I had the rare opportunity to meet Dr. Brenda Wong, a native Singaporean and a professor of pediatrics and neurology at the University of Massachusetts Chan Medical School, where she was the founding director of its Duchenne Program. My parents had heard Dr. Wong’s name since…

Note: This column contains spoilers for the series finale of the Netflix TV show “Dead to Me.” As I write this, the date is April 3. I’ve just survived the longest and most helpless week of my life. Two Sundays ago, my support worker, Glenda, suddenly fell ill from…

On the evening of March 8, I was mindlessly scrolling through my Facebook feed when I stumbled upon a public post from Singaporean Paralympic swimmer Sophie Soon, who uses a guide dog for help with her visual impairment. In the post, which has now been deleted, Soon expressed grievances with…