- Loretta MacInnes
Fabry Awareness Month
April is Fabry Awareness Month – an opportunity to focus on Fabry Disease and how it affects individuals and families across the globe.
Classed as a rare illness, official statistics state that Fabry affects around one in every 40,000 people. However, other research shows that this figure could be as high as one in every 3000 people – meaning that it could be severely under-diagnosed. This is a worry because there are effective treatments available – but you obviously need to be diagnosed in order to access these.
Raising awareness amongst the medical community is key to improving recognition of the symptoms that could indicate Fabry Disease. To help increase this understanding I have written a series of articles that outline my own experiences of the illness and my journey to diagnosis. Working together to fight Fabry will hopefully improve diagnosis, facilitate more rapid access to treatments and – hopefully one day – find a cure.
Resources for Fabry Awareness Month
Many of the Societies that are there to help and advice people with Fabry Disease have developed extra resources for Fabry Awareness Month. I have added links to some of these below. Please let me know if you have any other links to add.