10-year-old UCLA patient lends voice to raise awareness of 'adult' lung disease that affects kids too

Pulmonary hypertension (PH) sounds like an adult disease, but the life-threatening lung condition strikes children too. Ten-year-old Lucas Van Wormer is one of them.

PH is like a kinked garden hose in which the pressure builds and backs up. The heart is forced to work harder to pump blood through the arteries. If the pressure gets high enough, the heart cannot keep up, and less blood circulates through the lungs to pick up oxygen.

Symptoms can include shortness of breath with minimal exertion, fatigue, chest pain, dizzy spells and fainting. The disease has no cure, except a lung or heart–lung transplant. Early diagnosis and intervention are crucial to improving the medical outlook for patients. When left untreated, it can be fatal within a few years. It is not known how many children have PH since many cases go undiagnosed.

Since it is generally thought of as an "adult" disease, research and treatments have been focused on older patients. In fact, there are nine drugs approved by the Food and Drug Administration for adults with PH, all of them within the past decade and a half, but there are no FDA–approved drugs for children.

That is why Lucas, an up-and-coming voice-over actor who has voiced radio commercials and an animated television pilot, has narrated a 30 second public service announcement to help educate the public about how the disease affects kids. The Burbank fourth grader wants people to know that there is a huge gap in research that focuses on younger patients like him.

"I want to find a cure for pulmonary hypertension. I hope my commercial helps do that," Lucas said. "It's important to me that doctors find a cure for PH so they can save thousands of lives."

Lucas' PSA, along with three others about the disease, were produced by Lucas's father, Steve, who also does professional voice-over work and works in television on-air promotion. Lucas and his parents, who are active with the Pulmonary Hypertension Association, hope the PSAs will gain momentum through social media outlets and broadcast TV.

"Lucas's role as a spokesperson will hopefully help educate the public about PH, which often goes misdiagnosed in kids, and the critical need for more research to treat pediatric patients who suffer from it," said Lucas' cardiologist, Dr. Juan Alejos, a professor of cardiology and director of the pediatric pulmonary hypertension program at Mattel Children's Hospital UCLA.

At age 4, Lucas, who was initially thought to have exercise-induced asthma, was referred to pediatric cardiologists at UCLA, where a physical examination and X-ray revealed a suspected diagnosis of pulmonary hypertension, later confirmed by an echocardiogram and a right heart catheterization.

Without any FDA–approved treatments for young children, UCLA is among a few hospitals in the U.S. on the forefront of successfully studying the use of an adult PH drug called Tracleer in the younger pediatric population. The drug prevents thickening of the blood vessels, lowers blood pressure and helps the heart pump more efficiently. It also helps improve physical activity.

Alejos said they have been using the drug for the past six or seven years, and the results have been good, with kids showing definite improvement. However, more research is needed.

"More awareness is needed too," Alejos added. "On average, it takes two years to get an accurate diagnosis, partly because the symptoms are easily confused with other conditions, such as asthma."

Hopefully, the PSAs will help spread the word. Lucas' spot, "Children and Pulmonary Hypertension," and the three others — "What Is Pulmonary Hypertension?–Early Diagnosis," "What Is the Pulmonary Hypertension Association?–PH Awareness" and "What Is the Tom Lantos PH Research and Education Act?–Advocacy in Action" — can be found by clicking here.

Each video also provides information on the Robyn Barst Pediatric Research and Mentoring Fund, which will provide funding for research of pediatric PH. 

"Nothing would make us happier than to have anyone who hears this PSA spot keep passing it on virally," said Steve Van Wormer. "And, of course, Lucas hopes for a million 'likes' on YouTube!" 

To learn more about the division of pediatric cardiology at Mattel Children’s Hospital UCLA, please visit www.uclahealth.org/pedscardiology.