It’s true—there’s power in numbers, especially when it comes to living with a rare disease.
Inside the hereditary angioedema (HAE) community, the term “HAE” is thrown around willy-nilly.
It’s a part of everyday conversation. Outside the HAE community however, hearing “HAE” is a rarity—about as rare as the disease itself. Why? Well, it’s just that.
Hereditary angioedema is rare, and subsequently, not established. According to the U.S. Hereditary Angioedema Association (HAEA), 1 in 10,000 to 1 in 50,000 people are diagnosed with HAE—not many more are even aware of it.
For this reason, and thanks to the Internet, the HAE community is rather close-knit. Still, finding that support can take time. If you have HAE, you can probably remember how alone you felt in the beginning stages of your diagnosis. You might describe your experience to being similar to that of Sue Smuda, mother to her daughter Abigale, who has HAE.
In January of 2016, Abigale was newly diagnosed with HAE. Desperate for information, Sue reached out to news anchor Molly Grantham, with her local news program.
“Hi, Molly. My name is Sue Smuda and my daughter who is 14-and-a-half years old (you know that ‘and-a-half’ is important to a teenager) was just diagnosed with a rare disease called HAE. Hereditary Angioedema. I am reaching out hoping you’ve heard of it. We are looking for help for Abigale.”
Molly graciously posted an article on their website to spread the word about Abigale. You see, Sue is looking for answers—answers that she could not find online. Sue describes her daughter as being vibrant and strong, as having high hopes for her future despite having HAE.
Abigale is on a medication for her HAE, but it seems her attacks are not improving. A twin brother is also in the mix, and Sue worries that because HAE is hereditary, he may be at risk.
It think it’s clear what Sue and Abigaile need, don’t you? A community of like-minded people on similar journeys. A community of people with real-life, empathetic answers. If you have information for Sue or can connect her family with support, visit Molly’s Facebook page and leave a comment.
For those like Sue looking for support, the HAEA’s website is a great place to start!
What tidbits of knowledge can you give to families newly-diagnosed with HAE? Give your advice below!