Living with a rare disease can significantly impact how you get about. Our grant recipients tell us this all the time.
Mobility aids such as wheelchairs, walking aids and scooters are essential for moving short distances. But, if you have a rare disease and need to make longer journeys, there is so much more than physical discomfort to consider. The mental anguish of getting from A to B can be just as debilitating.
Leanne
Leanne, has Ehlers-Danlos Syndrome, affecting her joints.
Knowing there will be an accessible parking space, close to her destination, so she does not have to walk far with her walking aids, is a luxury she is not always afforded.
It’s “off-putting”, she says. Sometimes it’s easier to just not make the journey.
Jack
Similarly with Jack, who has spinal muscular atrophy type 3. He drives from his powerchair and calls his Wheelchair Accessible Vehicle a “lifeline”.
But is it a lifeline if, when returning to his parked vehicle, Jack finds another car parked too closely, obstructing his tailgate? How is he meant to get back in his vehicle?
The anxiety of travelling if you have a rare disease, is real. It’s an additional tax slapped on individuals and their families.
Eva
Eva’s dad told us that, prior to getting their current Motability Scheme vehicle, simple trips to the park were out of the question.
There was not enough space in their old car to travel as a family of five and pack all the vital medical equipment for his daughter, who has CHARGE syndrome, needs on a day-to-day basis.
Rare Disease Day
Today is Rare Disease Day and so we’re highlighting what it’s like to live with a condition that means routine journeys cannot be taken for granted.
On behalf of the 3.5 million people in the UK living with a rare condition, we advocate for equitable access to diagnosis, treatment, care, and social opportunities.
Yet, none of these things are possible without safe, reliable transport or the means to reach them in confidence.
Travel equity only exists if everyone can make the journeys they chose without compromise. We are working towards a future where all journeys are possible.