On this week's Laura's Good News podcast, WCCO's Laura Oakes chats with the inspirational Abbey Hauser, a young Chanhassen woman making a huge difference in the rare disease community while battling one herself.
You'd never know a young Abbey Hauser was scared to go to bed at night because she might dislocate her knee in her sleep. Or that it “bummed her out” after soccer games that other kids wouldn't high-five her because her hands looked different. Or that a parent on one of those same soccer fields actually made fun of her knee braces.
You wouldn't know any of this judging by Abbey's bubbly personality, smarts, and acceptance of her rare genetic disorder called Classical Ehlers-Danlos Syndrome, which affects the body's connective tissue.
“So for me, my skins really stretchy and it bruises really easily,” Hauser explains. “Then it scars really easily. So it's more fragile in its building. Basically it's like a house made of straw and everyone else is made of brick.”
Abbey studied Kinesiology at the University of Minnesota and is now focusing her energy on her advocacy work for the rare disease community. She's a member of the Minnesota Rare Disease Advisory Council, and has more recently taken on a larger role at the federal level, named to the board of the EveryLife Foundation for Rare Diseases based in Washington D.C.
It's a position Abbey hopes will inspire other national boards and foundations to include younger voices at the table.
In between, she's as active as she can be depending on her pain levels, even completing the Chicago Marathon on crutches a few years ago.
“It was one of those things where running was getting harder,” Hauser explained. “And my physical therapist had suggested using crutches for walking, because it helps take the pressure off the spine. And that was helping a ton. And I was kind of like, well, if I can walk, like why not run?”
Her friend, Anna, ran with her, keeping track of when she needed to take her pain medication over the course of those seven hours.
So what keeps Abbey going? She recently blogged about the power of hope, citing Matt Haig, author of The Comfort Book.
“He has some analogy in this book where he talks about we're only afraid when we get lost, because we don't know the forest that we're in,” Hauser said about the book. “If you're lost in the woods, you don't know where you're going. And he says something where it's like, sometimes you never leave the forest, but you just have to get used to living among the trees. And when he said that I was like that fits. That's how I view chronic illness. It's like, we're in rare disease, and I’m never leaving this forest, whether that's a negative outlook or not. I feel like that's very realistic. I know a cure is not in my lifetime and maybe a treatment is, but I'm still going to be in this forest. So some days it's harder to find comfort among trees, but it's worth finding and believing that someday the trees will make sense.”
Laura’s Good News airs Sunday mornings at 6:30 on News Talk 830 WCCO and is available anytime on the Audacy app.
Abbey Hauser is the daughter of 5 Eyewitness News Chief Political Reporter Tom Hauser who also works as a fill-in host for WCCO Radio.
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