Jess Short had more than 30 surgeries before she turned 18.
She lives in Waterford West and, like many people with a rare disease, she has spent years navigating a system that is not always set up for her.
When I sat down with Jess, one thing became clear. This is not just one person’s story.
Rare diseases may be individually uncommon, but combining all rare diseases, around 13,500 people in Forde are living with one.
Last week, we brought the community together for a forum. To listen and understand what needs to change.
After that forum, I heard from Kerri Meulman, who is undergoing treatment for a rare cancer. She shared what it takes to access the care she needs, including the financial pressure and the uncertainty that comes with it.
And there is another issue that does not get talked about enough.
For many people, getting a diagnosis through genetic testing can come with a fear. The fear that those results could be used against them when applying for life insurance.
That fear is real, and it can stop people from getting the answers they need.
That is why the legislation currently before Parliament is so important.
It will make it unlawful for life insurers to use genetic test results to deny or limit cover. It also introduces serious penalties for doing so, which sends a clear message that this behaviour is not acceptable.
Put simply, it gives people confidence to get tested, to get a diagnosis, and to access the treatment that could change or even save their life.
This matters because earlier diagnosis can mean faster treatment and better outcomes.
Because behind every rare disease is a person, and they deserve a system that works for them.
