World FSHD Day: The Day After

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.

Reading other people’s reflections mattered. The FSHD Society shared stories from across the world, each one different but all speaking with the same honesty. They talked about identity, refusing to be defined by the disease, strength, humour, and the determination to keep going. Others shared the emotional impact on families. The insecurity, grief, frustration, anger, purpose, responsibility, and the shift from passion to adaptation. Parents advocated for their children. Children advocated for their parents.

Every story was different, yet familiar. I recognised myself in their words, photos, and life, even when experiences weren't identical. We share the refusal to let FSHD become the whole story, the resilience without pretending it's easy, the way acceptance becomes strength, and how daily life turns into a series of adaptations. Within each story the same emotional, relational, and physical toll, the willingness to speak openly about vulnerability, the rejection of pity in favour of dignity, and the belief that awareness is a lifeline.

Here are the Voices of FSHD that the Society shared.

[Image 2. Esmeralda’s Story. She one of three children out of seven in her family. She reflects on how, being a sporty person, that FSHD has turned hobby to responsibility]

[Image 3. Valerie’s Story. She reflects how every day pains were symptoms. How it was a journey to acceptance and fighting it]

[Image 4. Ben's Story. Reflects and inspires, sharing that FSHD doesn't define who we are or what we can achieve]

[Image 5. Andrew’s Story. He also inspires like Ben commenting not to give up]

[Image 6. Kathy's Story. She reflects as a wife to a husband with FSHD. How FSHD impacts every aspect of life]

[Image 7. Tracy's story. She reflects on wasting time on insecurities and not embracing life as great. Live for tomorrow]

[Image 8. Erin's Story. She reflects as a mother to her FSHD child and how it affects families]

[Image 9. Colleen’s Story. She reflects on her life as a whole from work, family, and FSHD. Remembering she's not alone]

These stories reminded me that even though FSHD is rare, the experience is shared.

There were moments of kindness too. A friend and his wife joined in with an orange‑segment selfie. 

[Image 10. T and K inside their house facing the camera. Its a hot day and T is not wearing a top. In both of their mouths are orange segments for the selfie spread on World FSHD Day]

James’ girlfriend, T, did as well. It’s nice that the next generation cares about awareness.

[Image 11. T is indoors, she is wearing a black top. She faces the camera posing with a orange segment for her orange slices selfie]

Three friends messaged to say I am an inspiration. It was lovely to hear. Awareness is the main point, but I do hope that my presence brings awareness. Others shared my posts, helping it spread a little further. I really appreciated that.

Rochester Cathedral also helped spread awareness by lighting their spire orange. Hannah contacted them as they periodically change the LED lighting system to celebrate occasions and commemorate causes. That meant more than I expected. A place tied to my faith, calling, and disability, illuminated together.

[Image 12. . Hannah and I are standing together at night with Rochester Cathedral glowing orange behind you. The full building and spire are illuminated, marking World FSHD Day.]

 

[Image 13. I am positioned in the road at night, facing the cathedral as it glows orange for World FSHD Day. The full building and spire are not visible ahead oof ms jts just the orangespire with houses around me]

[Image 14. I am facing away from the camera, looking up at the cathedral’s spire glowing orange in the dark. The focus is on the illuminated spire rather than the whole building.]

There is a harder side to all of this. Even though I'm in the top severity, I saw people who are further along than me. Some are bed‑bound, have lost arm or hand control, or can no longer keep their heads upright. Some had facial masking and myopathic facies, where facial muscles have wasted and weakened and they’ve lost expressions, or lagophthalmos, the inability to fully close the eyelids, and oral incompetence, where the mouth stays open.

I’m not there yet, but I recognise parts. I already sleep with my mouth open. I slur more now and struggle with certain letters. My resting face looks grumpy even when I am not. I’m putting more effort into smiling. I can see the degeneration beginning. The arms and legs don’t frighten me. Aids and support exists. The face and speech I'm not ready for. Thankfully, I think I'm still a good decade away from that, so I’m choosing to enjoy what I have now.

These individuals still show me that a life can be led. A story can still be told. Adventures still happen. Support is still there. Adjustments, inventions, technology, and new ways to help are constantly evolving.

The current drug trials show this.

[Image 15. An infographic explaining the current approaches in FSHD drug trials. It shows three categories: therapies that suppress or silence DUX4, treatments that support muscle growth and strength, and drugs that reduce inflammation in FSHD muscles. The graphic highlights that several organisations are working on these approaches and that some drugs are already in clinical trials.]

Some therapies try blocking DUX4, the toxic FSHD gene, by silencing or reducing its muscle activity. Others support muscle growth, helping weakened muscles cope better with the damage. A third group tries restoring immune balance by calming the inflammation within the muscles. More than twenty organisations are working on these ideas, with several drugs already in clinical trials. None of them are cures yet. There is still a lot to learn but for the first time the science is progressing, not just dealing with symptoms. That brings hope.

The science still depends on awareness. Awareness leads to funding, and funding pushes the science forward. That's where yesterday becomes harder. While those like me share our experience and voices, the conversations around it often fall silent. When I share FSHD posts the engagement drops, making support quieter. That contrast is difficult.

People want a happy news feed. Pictures of birthdays, good news, photogenic landscapes, or achievements. When I post about FSHD, even on World FSHD Day, the posts struggle.

People don’t want to see this side. It makes them uncomfortable. Without likes and comments, the algorithm swallows the post and awareness doesn’t spread. I see it in real life too. Friends and family have distanced. My life hurts too much when they see FSHD progressing. It’s easier for them. The problem is that the longer they stay away, the bigger the change. It hurts, even if i understand why they pull back.

Yesterday, people with FSHD came together, united, and raised awareness about the hardest parts of our lives so research improves and futures change. Without that awareness, our lives progress in silence.

This is why every share, selfie, message, and moment meant so much yesterday. It shows that even in something so rare none of us are truly alone. Bring on World FSHD Day 2027.

[Image 16. A orange square graphic for World FSHD Day 2026]