Happy MPS Awareness Day
Forgive the rather distressing-looking image, I promise it’s nowhere near as traumatic as it looks
Living with Morquio syndrome comes with challenges many people will never fully see.
There are hospital appointments, respiratory issues, fatigue, pain and accessibility barriers that can make everyday life far more difficult than people realise.
Today was my weekly Vimizim infusion treatment, something that has become part of my life living with Morquio syndrome.
Forgive the rather distressing-looking image, I promise it’s nowhere near as traumatic as it look.
These treatments can be physically draining, but they are also a reminder of how important progress in treatment, research and support truly is for people living with rare conditions like MPS IV.3
Over the past year, I have had the opportunity to connect with others in the MPS and Morquio community, including attending a conference with BioMarin Pharmaceutical in Dublin last year. Hearing different experiences and discussions around treatment, healthcare and quality of life showed how important lived experience is in shaping bet1ter understanding and support.
This summer, I will also be meeting the BioMarin Pharmaceutical team again at their headquarters in Cork, something I am genuinely looking forward to.
While there has been progress, there are still many barriers facing disabled people and those living with rare conditions.
Accessibility is still too often treated as an afterthought.
Healthcare can still be exhausting to navigate.
Public spaces, transport and services are still leaving disabled people behind far too often.
But despite those challenges, I remain positive about the future.
Because awareness is growing.
More people are listening.
And more disabled people are speaking openly about their experiences and refusing to be invisible.
Living with Morquio syndrome is not easy, but it has taught me resilience, perspective and the importance of continuing to push for a more accessible and inclusive society.
Disabled people do not need pity.
We need understanding, dignity and the same opportunity as everyone else to live full and independent lives.
Follow Irish MPS Society and MPS Society UK for all the latest developments in support and medication breakthroughs.