Celebrating 30 years of Fabry Australia with ‘30 Fabry Stories, from the Australian Fabry Community.’
Mark de Wolf, 53, runs a gardening business and works as a bush regenerator (nature conservation). He was diagnosed with rare disease, Fabry, in 1984.
“I know we are making new discoveries with treatments.”
When I was 14 my mother suffered a stroke and after she came out of hospital her doctor noticed a translucent pattern in her eyes. This led to a Fabry diagnosis.
My two sisters and I all tested positive to Fabry, but my brother didn’t have Fabry.
I wasn’t too concerned about Fabry then, we were more worried about our mother. I was still in good health and didn’t have many symptoms.
I emigrated to Australia from The Netherlands in 2000. Years later, my sister’s son, my nephew, started having issues relating to his Fabry, so I looked into it a lot more and started contacting doctors here in Australia.
I lead a very active life and get out in the bush a lot. My heart is the biggest problem. Blood pressure and heart rate are both very low and I get very tired. But Fabry is a progressive disease, and it’s sometimes difficult to separate the natural aging process from Fabry related decline.
I was approved for treatment in 2007 and have a fortnightly infusion.
Being part of Fabry Australia has allowed me to make contact with other people affected by Fabry and share information about the disease. Many of us have the same problems and issues.
I’ve got family in Africa and The Netherlands, so I like to keep in touch with what’s happening internationally.
I know we are making new discoveries with treatments and patient care is becoming individualised, as every Fabry patient is different. I’m cautious of expecting a quick cure in the near future. For me, personally, nothing has changed in my treatment.
I think a group like Fabry Australia is very important: we strengthen each other and build awareness in the community. Having Government support is critical too.