Talking about mental health isn’t the easiest thing to do. Sharing our feelings can be uncomfortable, and asking for help may seem like exposing a part of ourselves we’d rather keep hidden. I’d always shared my feelings openly and leaned on family and friends. For a long time, I thought…
Grief
Have you missed me since October? Did you wonder if something Pompe-related had happened to me? Did I get lost “on the road to Pompe,” or did my engine break down somewhere? Truth be told, I got lost in a bank of fog and didn’t know when it…
Over the summer, I lost someone very dear to my heart. My grandfather passed away on July 18 at 75 years old. It took me quite some time to come to terms with his death, even though we knew it was coming. I still find myself in tears when I…
In some alternate reality, receiving my diagnosis of late-onset Pompe disease would’ve made all my problems go away. But in this universe, my rare disease is only one piece in the puzzle of my life. Six months before my diagnosis, our oldest son, Adam, passed away at age…
Recent Posts
- No Pompe journeys are the same, but we don’t have to walk this road alone
- Patient interviews reveal experiences with Pompe treatment and trials
- My daughter with Pompe disease is brave, but every kid has their limits
- Study maps molecular changes in Pompe muscle cells
- Parenting a child with Pompe comes with worries about an uncertain future