breathing difficulties

How the recent poor air quality affected our rare disease family

Like much of the East Coast, we’ve been experiencing poor air quality here in Pennsylvania due to smoke from Canadian wildfires. In my 21 years, I don’t think I can remember a time when our air quality was this bad. Fortunately, we’re in the south-central part of Pennsylvania, so…

Managing the Exhaustion That Comes With Parenting a Child With Chronic Illness

Being a parent can be exhausting. Whether the child is a newborn, a toddler, or even a bit older, there are some days when we hear the alarm go off or wake up to our kids crying and mumble, “Just five more minutes, please!” I knew what I was getting…

The Downsides of Sleeping With a BiPAP

I knew having a child meant that I would lose a lot of sleep, but I didn’t realize the extent of it. Most children sleep through the night by age 4, but my son, Cayden, does not. There are many reasons why sleep is challenging for him, but it doesn’t…

Fatigue Called Most Disabling LOPD Symptom in Patient Interviews

Fatigue, pain, muscle weakness, and breathing difficulties are the most common and highly disabling symptoms of late-onset Pompe disease (LOPD), according to a study that combined data collected from published literature, expert clinician interviews, and patient interviews. In addition, patients reported that mobility problems had the most impact on…