I think spreading awareness is so very important, both on a personal level and in the bigger picture.
Personally, spreading awareness has become a passion for me, not only because I have hereditary angioedema, but also because my daughters have HAE. I don’t ever want them to feel alone on their own HAE journeys, like I did. Having HAE used to embarrass me; for a time, I even thought that calling my HAE a “condition” instead of a “disease” might prevent people from seeing me as different.
When I truly decided to make my family and friends aware of my HAE, I received more compassion and support than I could have imagined. I’ve called on them many times for help, and now that they better understand HAE, other members of my family decided to get tested. By spreading awareness, I helped them become more informed about their own health and lifted a huge burden from my shoulders that I didn’t even realize I was carrying.
Outside of my personal circle, I have talked about HAE with everyone, including people I’ve just met! In doing so, I have been able to learn about other rare diseases and chronic illnesses, fueling my passion and belief that spreading awareness is important.
But I’m not alone in this passion—there are many wonderful support systems in the HAE community that also spread awareness and education. There’s the Hereditary Angioedema Association (HAEA), a nonprofit organization dedicated to families with HAE. Social media and the technology of cell phones and texting seem to have only increased that community awareness.
HAE is a rare disease and I believe the more people who are aware and educated, the more valuable that awareness could be for the larger HAE community and for individual families, like mine.
Why do you spread awareness about HAE? Leave a comment below!
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