Eleven-year-old Cheyann Cooper, of Sonora, suffers from chronic nosebleeds that last for hours. So she and her mom, Stacy Cooper, who also gets them, drove six hours to see experts at UCLA.
"Sometimes these patients become anemic or even have to get blood transfusions or go to the emergency room because the bleeding is so severe," said Dr. Justin McWilliams, co-director of UCLA's HHT Center for Excellence.
Stacy and Cheyann Cooper discovered they both suffer from HHT.
One sign of HHT, which causes blood vessels to grow abnormally, is small red spots on the face, lip and tongue.
"They can cause problems like stroke, brain abscess, lung hemorrhage and even death," said Dr. McWilliams.
Besides the nose, abnormal blood vessels can appear in the brain and lungs. So the two screening tests for HHT include a brain MRI and an ultrasound lung study.
"If we catch it and realize it, we can treat it and prevent these horrible complications," said Dr. McWilliams. "I know there's a lot of people who are either denying the illness or don't realize they have the illness who really need to come in and get the proper care."
Many patients go years before getting the correct diagnosis.
The tests revealed Cheyann has abnormal blood vessels in her lungs. This used to be treated with major surgery, but now doctors can go in with a catheter and close off the blood vessel with a coil.
"It just means the world to me to know that she's in good hands and that she will get the medical care that she needs throughout her life," said Stacy Cooper.
Continuous checkups will help Cheyann stay on top of her condition. People with HHT can live a normal lifespan, but the key is to get diagnosed.
"Some children can die from this on the playground, never knowing they had HHT," said Stacy Cooper.
