World FSHD Day 2026 is over. Many people worldwide with FSHD, spread across countries, cultures, and communities came together for one cause. Not all 8,000, but enough to make me feel united. They shared their stories, photos, orange‑segment smiles, and honesty. I have loved it. I’m not alone.
World FSHD Day has arrived again. Despite posting on Facebook each year, I last wrote about it here in 2018, and looking back now is like opening a time capsule. I knew my condition and feared the future but didn’t understand it yet. I walked, even when it was difficult, constantly fell, experienced pain and vulnerability, and felt trapped in my body.
My FSHD is different now. I no longer walk. I still fall, but it’s progressed to my core. The pain, vulnerability and trapped feeling have deepened in ways I never imagined. Everything I was worried about has now occurred and I've been living with it for several years. That’s the nature of FSHD. It’s not just degeneration, but progression.
Some Sundays at church are work. Some are worship. This week was worship.
It’s not always easy to enjoy church when you serve there. There is always something to do, someone to speak to, and a task waiting. The Sunday before was like that. I had much needed work conversations before the service. The service itself was fine, but I wasn't uplifted. The sung worship was good and the band did well. The lead made me laugh with a story about her competitive streak when naming her childhood bear, which suited our teddy bears picnic theme.
