Not Alone: Teen's journey with rare disorder inspires book

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Wednesday, May 15, 2024
Not Alone: Teen's journey with rare disorder inspires book
Unbreakable Spirit: A teenager living with a painful condition is not letting it slow her down. She is now helping other kids with chronic illnesses know they are not alone.Carrie Durso has Ehlers-Danlos Syndrome, a rare medical condition. She wrote a book to help other kids fighting rare illnesses know they are not alone

FRIENDSWOOD, Texas -- Carrie Durso is living with a painful medical condition that causes her joints to dislocate.

"I have Hypermobile Ehlers-Danlos syndrome, which is a rare connective tissue disorder that can best be described as writing a bike with all of the screws loose," Carrie explained.

The condition can be debilitating to those with a severe form of the disorder, but the 17-year-old is not letting it slow her down. Carrie has been part of several organizations including marching band and Girl Scouts.

Her mother, Lauren, said she is very proud of her daughter, "she has handled this remarkably well for a kid her age."

Lauren also shared that her family was lucky to have been quickly referred to the doctors at Texas Children's Hospital.

"Especially Doctor Torres, who really put her on a path to finding out what was going on and making sure she understood that this was valid and that she had real symptoms that were not in her head," Lauren said.

Carrie now wants other children fighting rare illnesses know they are not alone. She has written a book "You're Not Alone Little Zebra" to help empower other children with chronic illnesses.

Click the video above to see the full story.