A Central Texas college student is bringing awareness to a rare genetic disorder she’ll have to live with for the rest of her life.
May is Ehlers Danlos Syndrome Awareness Month. This is a disorder affecting connective tissues in the body, making it easy to dislocate joints and cause chronic pain.
“This is something I was born with and will die with,” said Alejandra Tristan.
Tristan takes two hours every morning to get ready, and it’s not because she’s doing her hair or putting on makeup.
“I usually have to wake up and put something back into place,” Tristan says.
It’s checking her joints, making sure her bones and tissues are in place, then picking the right outfit.
“Materials will rip with my knee braces or rip from all the stretching that I have to do for my back brace,” said Tristan.
A walker and wheelchair are necessary to help her get around, because Tristan’s rare genetic disorder is incurable.
According to Genetic Home Reference there are 13 types – and combined, it’s reported one in 5,000 people around the world will suffer from one of the variations of the disorder.
Tristan said it took months before her doctors figured out the problem. In the meantime, she was dealing with bizarre symptoms.
“Joint damage in both of my knees, as well as dizzy spells and passing out,” Tristan says.
Fast forward six years, and Tristan says her disorder is a blessing in disguise. She’s hopeful doctors will eventually find a cure, but while studies and research continue, she wants to comfort those in pain.
“I want to be able to be a physical therapist and actually work with other patients like myself,” said Tristan.
Tristan just wrapped up her sophomore year at University of Mary-Hardin Baylor. She’s working on a Health and Fitness degree with an emphasis in Physical Therapy, expecting to graduate in 2020.