I came to the world of rare disease when my late mother, Herself, got ill. We were all bothered and bewildered, and not at all sure of what was going on. I googled; we cried. We spoke to doctors; we cried. There was more searching and more crying. It was not a cheerful time. Herself was getting progressively worse, we didn’t know how to cope, and we felt totally isolated.
Until somebody reached out, took our hands and helped us to take the next step. And the one after that.
My mum died in 2011, and my bloggy buddies and real life friends kept on holding tight. You all had my back then, and do still, because there are always the wobbles. The rickety bridges to build and to cross, the anxiety to face down, the fatigue to recover from, and the brain fog we all have to accomodate.
It can be easy to be angry or disheartened in the worlds of rare disease and health transformation. I can still do a good rant. But my family have been struck by rare disease more than once. I can’t walk away in a huff. I have to take another’s hand, gather myself and reach out again. We keep needing to move into the discomfort and the challenge to make connections to make things happen.
We can work together. We can make a difference for one another and for ourselves.
It doesn’t just happen. It takes all our networks, our shared understanding and our commitment.
Step by step, holding hands, supporting each other.
It is international rare disease day. Our charity is holding 2 events today, and an all Ireland conference on rare disease on Monday 5 March. We have patients and families, local councillors, an Irish government Minister, clinicians and policy folk gathering in rooms across Northern Ireland to consider patients as equal partners in research, training, service design and delivery, and in shaping the future. In the current argot, we are coproducing. It’s the only way.