Peyton’s Story: Living with Turner Syndrome

Video Transcript 

Lisa Krummen, Peyton’s mom: “My oldest daughter had a friend who has Turner Syndrome, and she came home and said, 'You really need to have Peyton checked.' Because Peyton was so tiny, and she had had lots of ear infections, and had trouble eating when she was little, and she thought it sounded like the story her friend was telling her.”

The Krummens live in Northern Kentucky, so they brought Peyton to the Turner Syndrome Center at Cincinnati Children’s, which happens to be the largest Turner Syndrome center in the country. The Center sees children of all ages, as well as adults.

Peyton: “I was 8 years old, and I was in third grade when I was diagnosed with Turner Syndrome.”

Philippe Backeljauw, MD, Director, Turner Syndrome Center: "It’s a clinical condition that is characterized by loss of all or part of one of the two sex chromosomes that girls have.”

The most universal characteristic of Turner Syndrome is short stature, but it also affects fertility, as well as the heart, kidneys, ears, and autoimmune, and digestive systems. Behavioral issues are common, too. 

Tony Krummen, Peyton's dad: “Dr. B. and everybody up there at the clinic did a very, very good job of laying it out and explaining it to us.”

Dr. Backeljauw: “The average age of diagnosis in the United States is close to 9 years. One of our major objectives is to also through education of the medical field and the medical community to decrease the age of diagnosis.”

If Turner Syndrome is diagnosed early enough, girls can take growth hormones, which can prevent extremely short stature. Peyton, now 10, has been taking them since diagnosis, and may grow to five feet.

Mom: “She doesn’t have any physical limitations, other than being short. She’s very active. She’s fit. She’s all muscles.”

Lori Casnellie, RN, BSN, Clinical Coordinator, Turner Syndrome Center: “For Peyton, I’ll always remember the day she had to show Dr. Backeljauw a flip in the hall.”

Peyton: “I’m at the doctor’s so much, I kind of consider it like my second home.”

The Krummen family is busy with doctors’ appointments, but Peyton is thriving, thanks to a care team with specialized experience in Turner Syndrome.

Dr. Backeljauw: “The way we do this is that we have a group of dedicated physicians, who all have developed over the last 20 years an expertise in Turner Syndrome care, no matter what their specialty is.”

Mom: “I think just making sure that your kids get the care they need will help them socially and physically.”

Peyton: "There are people out there that will accept you for who you are, trust me."