World FSHD Day: A 2026 Reflection

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 occurred now and I've been living with it for several years. That’s the nature of FSHD. It’s not just degeneration, but progression.

Back then, I understood muscular dystrophy in simpler terms: weakening muscles, pain, and a slow decline that no one could quite predict. The science was broad and vague. FSHD was just one MD strand that affected muscle groups, led to wheelchair use and crippling disability, and followed a personal map. After twenty years, prognosis felt like a list of possibilities where no clear pattern emerged to validate worst-case scenarios. I lived in a tension between frightening predictions and determination to carry on regardless.

The picture is sharper now, but more complex. FSHD is divided into types and understood through greater genetic understanding. With new research, rediagnosis, and advancements, we now understand why my "expected path" never matched. It's gone from rough guesses to detailed genetic explanations, even if treatment remains impossible. The progress matters. It gives future generations, including my boys, a clearer, better, and hopefully more effective future.

What is FSH Muscular Dystrophy?

FSHD affects around 1 in 8,000 people worldwide and roughly 2,500 to 3,000 people in the UK have been diagnosed with it. Most people have never heard of facioscapulohumeral muscular dystrophy until someone they know is diagnosed. People search for answers, wanting to know what FSHD is, its symptoms, progression, and what life with it feels like. It's why I write. Awareness matters.

FSHD is a genetic muscular dystrophy that weakens the face, shoulders and upper arms, then moves uniquely through the body per person. It has two types. FSHD1 is when a section of DNA is shorter than it should be, allowing the damaging protein called DUX4 to switch on. FSHD2, which I have, is when a gene that should keep DUX4 switched off stops doing its job. It's less common, more unpredictable, and severe because the faulty switch affects more areas, giving DUX4 more opportunities to activate and cause damage.

My progression started in early childhood. I was bad at races, couldn’t whistle, and struggled with calisthenics, like push-ups. By thirteen I developed a foot drop and started falling. I used a walking stick in my twenties, a wheelchair occasionally in my early thirties, and became a permanent powerchair user at thirty‑eight. By forty I couldn’t stand independently unless lifted, but my ankles or legs give way quickly. My core has weakened, my neck has slouched for years, and my face strength and speech have deteriorated. FSHD even takes your smile, which I'm finding harder to do now. 

Over the last year my core began to fail. I wobble when I sit, collapse if unsupported, and struggle to stay upright. Eating is difficult because my body folds in on itself. The fear of falling has returned, the same fear I had when my legs would collapse, leaving me vulnerable again during transfers. Pain has increased. Weakened muscles pull bones and joints out of alignment. Deep stabilising muscles deteriorate. Everything strains to compensate. Every muscle and joint painfully pulses, day and night.

Despite support from my wife, family, and friends, FSHD feels isolating in a country of 69 million when only 0.003% share the deterioration, progression, and pain. I have Facebook friends across the UK but had never met anyone with FSHD in person until our church Christmas fair last year. Emma, a PTA member from our local school, recognised and asked if I had FSHD. Her dad had severe symptoms, her sister moderate, and Emma mild. She saw the posture, movements, facial weakness, and “FSHD look” from living with her dad. Meeting someone locally with FSHD was incredible, especially considering the odds against it. Her family shows the breadth and variety of this condition and reflects my experience.

This is why awareness matters. Not for pity or inspiration, but understanding, recognition, and making a rare disease less isolating. It helps those who search “FSHD symptoms,” “FSHD progression,” “FSHD1 vs FSHD2,” “FSHD life expectancy,” and “living with FSHD,” hoping for clarity in a world that rarely offers it.

Prognoses around FSHD are scary, including my own, but after thirty years, the biggest change isn't my degeneration or the shifts in diagnosis, science, and future progression. It's in me. I no longer measure my life against missed death dates, worst case scenarios, or ever-changing markers. My story sits within a wider story of disability, faith, justice, and belonging that I refuse to step out of. World FSHD Day isn't about presenting a life worth pitying so support is offered. It's helping people make a connection with the person, explore the world we live, and understand the reality behind the diagnosis.

Hopefully, this reflection helps understand the condition and me better.

FSHD’s cruellest feature is losing your smile. Each year, orange‑segment selfies are shared to raise awareness, using the colour of Muscular Dystrophy and the part of the disease that hurts the most. As my face changes and my resting expression looks more grumpy, this small act has become even more important. Today my family are joining me so every smile still shines through, and if you want to join in, you can.

[Image 2. I'm indoors, in front of a cabinet, wearing a dark green top holding a segment of orange in front of my mouth. Matching the muscular dystrophy colour orange while representing the lost smile the condition causes.]

[Image 3. Hannah is indoors, wearing pink glasses and a black top as she's holding a segment of orange in front of her mouth. Matching the muscular dystrophy colour orange while representing the lost smile the condition causes.]

[Image 4. Midge is indoors, wearing a black top, in the background is a pink cat picture. Leigh is holding a segment of orange in front of her mouth. Matching the muscular dystrophy colour orange while representing the lost smile the condition causes.]

[Image 5. Will is at college, wearing a green top and blue lanyard. He is holding a segment of orange in front of his mouth. Matching the muscular dystrophy colour orange while representing the lost smile the condition causes]

[Image 6. Arty is indoors in a green room in front of brown doors. He has a segment of orange in his mouth. Matching the muscular dystrophy colour orange while representing the lost smile the condition causes.]

[Image 7. James is outside the house wearing a white top. He is holding a segment of orange in front of his mouth. Matching the muscular dystrophy colour orange while representing the lost smile the condition causes.]

The FSHD Society are also inviting people living with facioscapulohumeral muscular dystrophy to share their stories through #VoicesofFSHD, giving space to the lived experience behind the diagnosis and helping each voice raise visibility, strengthen advocacy, and connect our global community. This post is my voice. This is me.