Happy Rare Disease Day!
While Sweet Baby has FPIES and it’s considered a rare disease, we’re thankful that she’s happy and healthy otherwise! There are so many other rare diseases and today is a day we raise awareness! Rare Disease Day is an annual, awareness-raising event that is co-ordinated by EURORDIS, National Alliances and Patient Organisations.
A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.
It’s estimated that 50% of rare diseases patients are children and there’s over 6,000 rare diseases. These diseases may also differ from patient to patient. Take my daughter for example; she has FPIES and while she is FPIES to chicken, soy, and oat, other children have other trigger foods. Not everyone is the same in certain diseases.
I’ve mentioned before there’s not enough research or scientific knowledge for FPIES and this is also the case for thousands of other diseases. It results in a delay in diagnosis and treatment options. Did you know there’s no test for FPIES? Help spread the word and awareness!
show support today by wearing jeans!
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