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About Me

In 2014 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 going on to result in such severe issues. He suggested genetic testing.


The result was a diagnosis of 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. 

 I have set up a Twitter account so I can keep as up to date as possible on information relating to Fabry and issues relating to invisible disability, genetic illnesses and rare diseases in general.


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 @MyFabryDisease.

Loretta MacInnes

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