My Fabry Disease
About Me
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Hello and thank you for finding your way to my website. Over ten years ago, I was under a great deal of stress which resulted in a number of hospital admissions for heart problems. The following year, a particularly switched on cardiologist determined that, although extreme stress was the trigger, there was something else underlying my severe issues. He suggested genetic testing.
The result was a diagnosis of Fabry Disease. I had never heard of it, but with hindsight we realised that some of the health issues I had had since childhood, were all red flags for Fabry. 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.
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I have a LinkedIn account and am connected to many wonderful people who work within the Rare Disease community trying, as I am, to make the world a little easier for those of us on this rare journey. As someone who has lived experience of a long diagnostic odyssey, and also as a mother or two young adults navigating life with a rare condition, my mission is to advocate for those not just with Fabry Disease, but also to help find solutions to deal with invisible disability, the awareness and diagnosis of genetic illnesses, mental health issues associated with living with a rare disease, and day to day living including education and employment issues - especially for rare young people.
I would love to engage with you, so please contact me with any suggestions for the site, or input you would like to make. You can also follow me on at @MyFabryDisease
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Loretta MacInnes