I’m Newly Diagnosed
Thanks for visiting the Fabry Australia website.
We’re so glad you’ve found us, as we’re here to support people just like you to understand what it means to live with Fabry and make things as easy as possible for you.
It’s likely you have so many questions and concerns and hopefully this website will go a long way towards answering those.
Signs and symptoms
Newly diagnosed patients often find that their many and varied symptoms finally make sense. Take a look at a list of possible symptoms HERE. You will also find a more technical list by Fabry subtype HERE.
To determine whether you have CLASSIC FABRY or LATE ONSET FABRY you can enter your mutation HERE to find out. Your mutation will be shown on your official diagnosis.
On the treatment tab you’ll find information about therapies that are currently available and also emerging therapies currently being researched and tested. Sometimes there are opportunities to participate in clinical trials and we update this tab and also include details in our quarterly eNews. You’ll also find contact details for the adult and paediatric Fabry clinics in your state if you don’t already have these.
Explaining Fabry to others
If you’re finding it difficult to answer questions from family members, friends or work colleagues, you’ll find the Understanding Fabry Disease brochure very helpful. It’s available as both a digital and hard copy, just contact us with your address if you’d like a hard copy posted out. They might also like to read the What is Fabry? section of this website.
Find us on social media
We encourage you to connect with us via social media, you’ll find links in the header on the home page. Our Fabry Australia Discussion Group on Facebook is a great place to connect with other Australians living with Fabry disease, why not head over and introduce yourself?
Connect with us
We’d love you to become a member of Fabry Australia, it’s FREE and will provide a number of opportunities and benefits. We’ll keep you informed via our quarterly eNews of upcoming conferences and events, clinical trial opportunities, emerging treatments, fundraising initiatives and more. You’ll also benefit from being part of our group advocacy efforts for better patient care in Australia, because together we have a stronger voice.
Speak with a volunteer
Sometimes it helps to speak with someone who understands what it’s like to live with Fabry disease. Please contact us and tell us a little about you and your concerns and we’ll get a member of our committee to contact you and set up a time to chat via phone.
Just be aware we don’t have set office hours as our committee are all volunteers who either have Fabry or a family member has Fabry.
A final word
We hope this has helped to answer many of your initial questions. Please take the time to look around this website and be sure to check out some of our stories. We want you to know that you are not alone, feel free to reach out at any time.
Fabry Australia ‘Understanding Fabry Disease’ Factsheet
Understanding Fabry Disease booklet was produced by Fabry Australia and reviewed by Fabry Australia’s Medical Advisory Committee. It is an excellent resource for explaining Fabry disease to a new diagnosed patient and their family and or friends. It is a helpful resource to show health professionals unfamiliar with Fabry Disease.