Abtei Hauser works hard to ensure that everyone is heard when it comes to rare diseases. She was recently named the newest member of the Board of Directors of the EveryLife Foundation for Rare Diseases. The Foundation is a national non-profit rare disease organization.
Hauser, 27, from Chanhassen, has a genetic disorder called Classic Ehlers-Danlos Syndrome (EDS). It is a genetic connective tissue disorder that affects collagen levels in the body. She was diagnosed after suffering strange injuries, such as: B. dislocating her knees when turning over in bed or discolouring on the floor.
She considers herself lucky to have been diagnosed as a child. Most people are diagnosed somewhere between puberty and their late 20s.
While EDS isn’t a degenerative disease, the effects of multiple injuries and trauma on the body accumulate over time, Hauser said, adding that it can mimic apparent degeneration. From puberty through the early 20s, symptoms increase and become widespread.
There are 13 subtypes of EDS. Hauser compares her condition to a house. Most people are built of sturdy materials. Someone with EDS is built with defective or fewer materials. While people with EDS may look tough or capable on the outside, even the smallest thing can cause an injury, she said.
Hauser, who moved to Chanhassen as a child and graduated from Minnetonka High School, studied kinesiology at the University of Minnesota and attended grad school in Kentucky to study biomechanics.
She had problems with her knees growing up. As she got older, her spine became a major source of pain. Gravity has caused stress fractures in her spine and her bone density is too low for surgery unless it’s an emergency.
In 2018, Hauser began using more mobility aids, such as crutches. These devices help her stay active, and she participates in adaptive sports like cross-country skiing and hand-biking.
As her symptoms became more frequent, she decided to share this aspect of her life and started blogging. She was then contacted by a local attorney and entered the advocacy group herself. When she wanted to start advocacy at the federal level, she joined EveryLife and got involved in its young adult program.
“I just thought this would be a really good way to jump in because I knew it would be with peers my own age who were just as motivated and motivated to talk about these things,” Hauser said.
Hauser was welcomed to the board at its winter meeting in late 2021. She is running for the young adult position on the board and will serve a three-year term. In addition to her board work, she works part-time in data entry, as a personal trainer with adaptive sports, and gives lectures.
As a board member, Hauser is tasked with reviewing the foundation’s budget and discussing various policies that the organization focuses on. The organization is aimed at public order. The foundation also empowers patient advocates and organizations to participate in public policy and the drug development process, she said.
Hauser wants to ensure that the young adult voice gets into the conversation. Since being part of the Foundation, she has met many people who are respectful and eager to hear more from a young adult perspective. She hopes that her involvement will encourage other organizations to include young people on their boards.
“But for an (organization) this big to sort of put it together, it’s a really cool tone for what we can do and how many more voices we can include at the table,” Hauser said.
Many people have the misconception that someone with a rare disease can’t appear healthy on the outside or be as active as they are, Hauser said. Despite being active, her illness affects every decision she makes throughout the day.
“I don’t think about it, but almost every decision I make is based on rare diseases,” Hauser said. “Whether I choose to do laundry before another event that I know … my pain may be too high to go anywhere else.”
One of the things Hauser enjoys most about being part of the foundation is knowing that her story will make an impact and continue to make an impact. She doesn’t know if her condition will be treated or cured in her lifetime, but she knows she can use her voice to advocate for better laws, policies, and drug development.
“That will ultimately play out when it’s time to get treatment or a cure for my condition,” Hauser said. “I’m just excited to be able to use my voice and to have my voice respected and celebrated in this rare disease community.”
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Hauser’s joining the board is one of the most exciting things for the team, said Mark Dant, chairman of the board of directors of the EveryLife Foundation for Rare Diseases. She’s a powerhouse at guiding people of all ages to empower their patient voice, he said.
Dant’s family has been part of the rare disease community for 30 years. His son was diagnosed with a terminal illness when he was just over 3 years old. Brain research has developed a new therapy and his son is the longest-treated person in the world for his disease.
“What we’ve learned along the way is that it’s empowering the patient’s voice that can transform the system and motivate science and partnerships to introduce therapies,” Dant said.
Looking back at Dant’s son’s diagnosis, he and his wife were in their late 20s and early 30s. At the time, there were no peers to watch out for or talk to about their journey, he said. That’s one of the reasons it’s exciting to see someone Hauser’s age rise in the rare disease community, he added.
“She can change lives through her voice and I think she will,” said Dant.
Because many rare diseases are genetic, children are diagnosed younger, which means parents are younger too, Dant said. Those parents can see Hauser as a peer, rather than everyone on the board being about 25 years older than them, he added.
“When you see someone who looks like you and has been through a similar journey as your family, you can better relate to that,” Dant said. “I think this is where Abby will bring so many more of us together.”