by Sara Stacey
Committee Member | Disabled Police Association
Rare Disease Day is recognised every year on 28th February. It’s a moment to spotlight the experiences of people living with conditions that many may never have heard of, yet shape every part of daily life. Globally, more than 300 million people live with a rare disease, and around 72% of these conditions are genetic.
As someone living with Rigid Spine Syndrome Muscular Dystrophy, I’ve learned that awareness goes far beyond medical terminology. What truly matters is understanding the impact a rare condition has, because that understanding drives meaningful support, better accessibility, and a more inclusive environment for everyone.
What Is Rigid Spine Syndrome Muscular Dystrophy?
Rigid Spine Syndrome is a slowly progressive congenital muscular dystrophy. It affects various muscles in the body, including respiratory muscles, and causes stiffness in the spine. These changes often develop gradually, influencing movement, stamina, breathing, and day-to-day functioning.
For many, including some medical professionals, it’s unfamiliar. But you don’t need detailed clinical knowledge to make a positive difference.
Why understanding the impact matters more than understanding the condition
People often worry that if they don’t fully understand a rare disease, they can’t offer the right support. In reality, it’s the willingness to understand the impact that matters most.
Understanding impact means recognising how a condition affects someone’s mobility, fatigue, breathing, energy levels, or pain, and how these influence their work and home life.
Once people appreciate these day-to-day impacts, offering helpful adjustments becomes much easier. These don’t need to be complex. They can be as simple as:
- Shorter walking/wheeling distances
- Flexible working hours
- Different meeting formats
- Accessible seating
- More time between commitments
You don’t need medical expertise, just empathy, adaptability, and the ability to listen.
My experience in the workplace
As a full-time powerchair user, my disability is visible, but many of the challenges my condition brings are not. Respiratory fatigue, pain, reduced flexibility, and careful energy management aren’t always obvious, yet they shape my day in countless ways.
I use my lived experience as a strength. It drives my advocacy and helps me push for better accessibility, stronger policies, and workplace cultures where disabled colleagues feel valued, understood, and supported.
Rare Disease Day is an opportunity to share these realities and highlight why understanding, not expert knowledge, is the foundation of true inclusion.
Rare diseases in the UK
Rare Disease Day also brings attention to the wider challenges people with rare conditions face, including:
- Delayed diagnosis
- Limited treatment options
- Gaps in specialist support
- A lack of public understanding
In the UK, organisations for individual conditions, specialist NHS centres, and local advocacy networks work tirelessly to improve outcomes. But lived experience remains one of the most powerful drivers of change.
On this Rare Disease Day, I encourage colleagues, leaders, and communities to:
- Listen to lived experience
- Recognise that you don’t need medical knowledge to be supportive
- Champion accessibility and workplace adjustments
- Value the diversity within the disabled community
- Support ongoing research and advocacy
My rare condition shapes parts of my life, but it does not define my ambition, my capability, or my contribution. The biggest difference comes when people understand how my condition affects me and are willing to adapt.
Rare Disease Day reminds us that true awareness is about connection, compassion, and building a society where everyone, regardless of rarity, is empowered to thrive.