Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’
Tracy Rintoul is carer for her husband, Stewart, who was diagnosed with Fabry disease in 2016. She lives in Bathurst, NSW.
“It was daunting, but we’ve gotta deal with it.”
When I first found out Stewart had Fabry, I dived into the research. It was daunting, we knew nothing about it, but we just thought “Whatever it is we’ve gotta deal with it.”
We met on a soccer field, I was sixteen, Stewart was seventeen. We were married at 20 and 21 respectively.
Stewart’s illness meant he became unemployable. It was depressing for him to see me going to work while he was confined to being at home.
Being a day-to-day carer is just being there for Stewart, making sure his needs are met and supporting him whichever way I can. We go to the doctor’s appointments together. We discuss what’s the next plan.
You’ve got to understand enough about medication, what works and what doesn’t. Stewart’s first enzyme replacement therapy didn’t work and we had to change, with our doctor, of course.
But then the next round of enzyme treatment was great for him. It helped him.
He’s a bit grumpy first thing in the morning, so I give him his space.
Stewart doesn’t want to know all the details of his Fabry, but I do. I need to know.
There’s so much to know about it if you want to know. I learnt about the genetics of it all. How the disease is a fault on the X chromosome. There’s just so much in your body that Fabry can affect. That fascinated me.
Stewart is now on an oral treatment, Galafold, which means taking a tablet every two days.
Every day I have Stewart is a blessing. Being together is the best thing in our lives.