You can head over to the NI Rare Disease Partnership site to get all the facts and figures- why the families, charities and clinicians felt the need to act together. You can read the findings of a report on patient experience of daignosis. You can join the charity.
We’re having the launch event at noon. Politicians meeting patients, hearing something of what it’s like to live with a rare disease, and why the UK government needs to publish a strategy for consultation. The event is about connecting people, and reducing the isolation felt by those living with a condition for which there is little or no support.
Some of us will be there early on, setting up displays, moving chairs, panicking about minor details. (Some of us may also be wondering when to sneak out to draw on a face and put on heels.) Eventually some big wigs will swan in and claim all the credit. That sort of stuff happens, but it’s not important.
The people we’re trying to represent are important. They will not all be in attendance. We’ve made some films, and I’ll be introducing those.
Pretend you’re there. Gawp at the politicians. Put yourself in their paths- particularly effective if you’re a wheelchair user- and wonder aloud what they’re doing on your behalf. Pep yourself up with some coffee. Let your child get her face painted. Play on the swings. Listen to a glamorous blonde (It’s imaginary; I can be glamorous in your imagination. Work at it until I am.)
It’s important to recognise the people who can’t be with us today.
Some are represented in the films; we’re featuring one of those, discussing the impact of a rare disease on a young woman and her family.
We need to remember that’s just one story. One condition. One set of circumstances. One family.
There are thousands of other families in NI affected by rare disease- in every constituency, in every planning area, in every GP surgery.
Let us, together, speak for
- The people without appropriate transport
- The people without respite care
- The people who are unable to communicate
- Those without family support systems
Let us speak for
- The people run ragged attending appointments
- The people who are too busy dealing with a wide range of caring responsibilities
- The people who aren’t connected to these support networks yet
- Those who are symptomatic, but not yet diagnosed
Let us speak for
- The people currently receiving emergency care in hospitals
- The people who think it’s not worthwhile coming to these events- sure, they’ll not change anything anyway
- The people who are too ill to travel, or to be left without a family member
- Those who don’t want to create a fuss or draw attention to their illness- the disease is not who they are
They can’t all be here, but we need make sure their voices are heard.
That’s what it’s all about.
It’s Rare Disease Day.