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What Does Rare Mean to You?
This month as we get ready to celebrate Rare Disease Day on February 28, we are reflecting on different aspects of rare disease and what it means to be a part of this community.
Hearing that my child was diagnosed with Freidreich’s ataxia (FA) was one of the hardest moments of my life. It was so scary to learn more about this rare disease that only affects about 1 in 50,000 people.
I have found that in time, as me and my family have come to meet others who are living with FA and also those researchers and clinicians who are working so diligently to find a cure, rare has come to mean something more to me.
Don’t get me wrong, I would most definitely not wish FA or another rare disease on anyone! But, honestly, I have come to know some very incredible humans who, in spite of this horrible disease, stand out as some of the most amazing people I know. They are rare because they don’t just try to take the easy route in life, but instead, persevere each day.
It is rare to find a community of people who can be so closely knit over a diagnosis, but we have found one. Our FAmily celebrates each other’s victories and mourns each other’s losses.
What does rare mean to you? Have you been able to find any good in the midst of the hard?
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1 Reply
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Being rare has taught me to appreciate the little things and to celebrate small victories, because they make a big impact!
I am also grateful for the FA Community and how we pick eachother up when we fall..literally and figuratively! Haha
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