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The Beginning

Fabry Disease? I had never heard of it. Nor had anyone I knew - including my very on-the-ball GP. I was told that it was a genetic condition, and that my children could have inherited it from me. And sure enough my children were tested and two of my three children also have the condition. Well if I felt guilty about things beforehand (like working, missing sports days...) that paled into insignificance alongside what I now felt knowing that I was responsible for passing the Fabry #gene to them.

There was good news though. Treatment was available. And although it may not do much to improve my heart issues, it could stop them getting worse. And most importantly, could prevent my kids…

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Articles of Interest

Living With Fabry Disease

The disease affects the whole body and causes chronic and intense episodes of pain in the hands and feet, a red-spotted skin rash, and a progressive loss of vision, hearing, and kidney function. It also is associated with an increased risk of life-threatening heart attacks and strokes. First appearing in childhood, Fabry disease can cause problems at home, school, work, and everyday life.

Resources

Discover Fabry

We found answers. We found support. We found out we are not alone.

My Fabry Disease

I had never heard of it. That diagnosis set me, and my family, on a rollercoaster of a journey. This website is a reflection of that ongoing journey. I hope you find it useful.

Rethink Fabry

Let's lighten the load for the Fabry community—and explore how to help those who suffer from daily symptoms and long-term challenges. Together, we can unleash new potential in how we face Fabry disease.

Fabry Australia

Fabry Australia’s mission is ‘Uniting and Supporting the Australian Fabry Community’.

Fabry Disease News

This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment.

FSIG

It is the mission of the Fabry Support & Information Group (FSIG) to raise awareness of Fabry disease and its symptoms, to advocate for community needs and to lead the fight for the most effective treatment possible and eventually a cure.

Canadian Fabry Association

The Canadian Fabry Association (CFA) is committed to improving the lives of those who live with and are affected by Fabry disease in Canada.

National Fabry Disease Foundation

Fighting Fabry Disease ... for better and longer lives!