Learning she had ALS at 27 felt tough. But woman starts organization to help other young women with ALS. Hopes
"Just because you’re faced with an obstacle doesn’t mean that you can’t go out and make a difference and having a super fulfilling life," Leah Stavenhagen said.
“It didn’t register what the name of the disease was,” she said. “You hear about such things people but of course you never think it’s going to be you. I felt like I had a very normal, easy life.”As Stavenhagen grappled with her diagnosis, she was also relieved to learn the reason behind her symptoms.
“Your whole future just evaporated,” she said. “It is a relatively rare disease. You go online and you look for reports or articles about other young people going through this and there just really wasn’t much out there.” Grappling with having ALS has been difficult, but Leah Stavenhagen strives to make a difference while enjoying a "fulfilling" life.Since starting she’s seen “several small changes” that seem to make a difference.
“I really have to think about the short-term future. I can’t be planning for years in advance. It feels very difficult to think about family events or things that might happen in the future,” she said. “It definitely impacted how I think about basically everything.” “We have a network to talk amongst ourselves about things that can be difficult, like how do you approach relationships with an ALS diagnosis,” she said. “We get messages like, ‘Hi can I join the group? I’ve actually had this disease like seven years ago and I wish something like that was out there earlier.’”Last year, Stavenhagen got married. Sometimes when she and her husband are out people will comment how sweet they are together or mention how hard it must be to need a wheelchair.
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