April is Fabry Disease Awareness Month: Let’s Learn Something New Today!
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April is Fabry Disease Awareness Month: Let’s Learn Something New Today!

So what is Fabry disease you ask? You came to the right place!
Fabry disease is a genetic, lysosomal storage disorder that occurs when a specific kind of fat known as globotriaosylceramide builds up in the cells, which the body is not able to process.
Common symptoms include:
  • Recurring pain in the feet and hands (acroparesthesias)
  • Small bundles of red spots on the skin that tend to be dark (angiokeratomas)
  • Loss of the capacity to sweat (hypohidrosis)
  • Dull, cloudy vision
  • Gastrointestinal issues
  • Loss of hearing
  • Tinnitus (roaring or ringing in the ears)
As symptoms worsen, they can become life-threatening, including stroke, heart attack, and acute damage to the kidneys.
So now that you’re a little more familiar with the disease itself, what about advocacy opportunities?

There are two primary support organizations in the United States for the Fabry disease community: the National Fabry Disease Foundation (NFDF) and the Fabry Support & Information Group (FSIG), in addition to several unofficial advocacy groups that are found all across the country and online. Click here for more information.

It’s important to be aware of existing outlets of information and support, as well as finding opportunities to create your own if you want or need to!

So during the month of April, spread the word and raise awareness by decking out in the designated Fabry awareness color – dark blue – and blasting out the awareness ribbon.
And for those that are able to, a donation to the cause is much appreciated. Every bit helps! Let’s go out there and spread a little knowledge and kindness!