Ehlers-Danlos and Chiari at the Olympics in RIO

By RDR Staff

allysa
 .
.
.
 Allysa is known for her competitiveness, determination and breaking barriers mindset. In 2015, she became the paratriathlete world champion, now she will be heading to Rio for the 2016 Paralympics to try and further her success as a paratriathlete.
.
.
.
.

Diagnosis

 

In 2010, Allysa was diagnosed with 3 rare conditions; Chiari II malformation, basilar invagination and Ehlers-Danlos syndrome.
Chiari II malformation means part of her cerebellum and brain stem is located below the foramen magnum. In other words, part of her brain is in her upper spinal canal.
Basilar invagination is an in folding of the base of the skull that occurs when the top of the C2 vertebra migrates upward. It can cause narrowing of the foramen magnum (the opening in the skull where the spinal cord passes through to the brain). It also may press on the lower brainstem.
Ehlers-Danlos syndrome is a group of inherited disorders that mostly affect the skin, joints, and blood vessels.
Allyssa eventually had to have her leg amputated which began her struggles of keeping up with training and staying in shape as an athlete.
Allyssa suffers from severe muscle impairment throughout her body. She also lacks proprioception do to Chairi II malformation but like many aspects of her life, Allyssa had adapted and is simply used to constantly looking down to see what leg is in front of the other.
She also suffers from epilepsy and has numerous autonomic nervous system issues.
 .
.

Thinking like a champion to overcome obstacles

The athlete was told she would be lucky if she ever walked unaided again. But being strong-willed and motivated she wasn’t ready to give up on her passion for running and competing. She had surgery in the beginning of August in 2010, and then competed in a triathlon in collegiate nationals 8 months later in 2011.
To Allysa, rare diseases are no handicap. Currently, she trains 7 days a week. She trains 2-3 times a day, weightlifts in the gym 3 days a week, swims once a day, and bike and runs 4-5 days a week- talk about dedication.
Allysa was also featured in ESPN Magazine’s 2016 Body Issue.
.
We appreciate your Facebook shares, Likes and Comments

Get Webinar Announcements And Our FREE Guide

Support EDS Awareness

See all upcoming events

Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
  • 10-20 years (17%, 927 Votes)
  • 2-5 years (13%, 665 Votes)
  • 5-10 years (12%, 652 Votes)
  • 1 year (5%, 264 Votes)

Total Voters: 5,311

Loading ... Loading ...