Woman with EDS Brings the Young Adult Perspective to Rare Disease Advocacy

Often, one’s own experiences inspire them to advocate for a certain cause. Abbey Hauser is an example, as she has become a voice for young adults within the rare disease advocacy space. Abbey lives with Ehlers-Danlos syndrome (EDS), which has pushed her to not only speak up for herself, but for others in similar situations. In fact, she brings this voice to the EveryLife Foundation for Rare Diseases as the newest addition to the Board of Directors.

Abbey’s Story

Abbey was diagnosed with EDS as a child, which is earlier than the majority of other affected individuals, who often have to wait until much later in life. Her diagnosis came after suspicion arose from odd injuries – Abbey would sprain her knee from something as small as rolling over in bed.

Also during childhood, Abbey moved to Chanhassen, Minnesota, where she remained throughout college. She studied kinesiology at the state university. It wasn’t until she moved to Kentucky for graduate school that she left the Great Lakes region. During this time, she dealt with the effects of EDS. Her knees gave her issues while she was a child, and her spine became a source of stress as she grew up. These problems led her to use mobility aids in 2018, as they allow her to remain active.

As time went on, Abbey felt the push to share her story, so she started a blog. She wrote about EDS and the impact it has on her life. It wasn’t long until she was discovered by local advocates and got into the advocacy game herself.

After working locally for some time, she decided that she wanted to move to a federal level. That’s when she got involved with the EveryLife Foundation. She started with the young adult program, and as of winter 2021, she fills the young adult position on the board. She will continue to do so for a three-year term.

Because Abbey’s goal is to ensure that the young adult voice is heard, this position is a fantastic place for her. She’s already met so many people willing to listen to and incorporate the young adult perspective, and she hopes that more organizations begin to do the same. Beyond this, she’s happy to know that her story will have an impact and help others.

Long-standing members of the rare disease community are happy that the young adult voice is being heard as well. Take Mark Dant, for example. He entered the community thirty years ago when his son was diagnosed with a rare, terminal brain illness. Fortunately, treatment was developed that has allowed Dant’s son to become the longest-treated person in the entire world with his disease. In his own words about Abbey,

“She is a powerhouse in leading people of all ages in empowering patient voice.”

About EDS

EDS is a rare, inherited disorder that affects the connective tissue. There are numerous forms of EDS, defined by their varying symptoms. While not all affected individuals experience all symptoms, possible effects of the disease include:

  • Fragile, highly elastic, and velvety skin
    • The skin bruises and tears easily while also healing poorly
  • Cigarette paper scars
  • Unstable, loose, and highly flexible joints
    • These joints dislocate or sprain easily, and the muscles/tendons can tear as well
  • Deformities of the spine, neck, and fingers
  • Malfunctions in the digestive system, respiratory system, and vessels of the brain
  • Pregnancy complications
  • Cardiac symptoms that may be fatal
    • Possible symptoms are stroke, varicose veins, internal bleeding, heart rhythm disorders, and heart valve disease

All of these symptoms are the result of inherited genetic mutations that impact collagen and its related proteins. In turn, connective tissue is not structured correctly and cannot function properly.

Find the source article here.

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