Courtney Crauthers

EDMOND — Lauren Johnson, 16, looks like a normal teenager on the outside but daily fights the symptoms of a disease called pulmonary hypertension, which she is determined to challenge.

“Try and beat me,” she said, referring to the disease.

The Pulmonary Hypertension Association defines PH as a rare disease with continuous high blood pressure in the pulmonary artery in the lungs, which results in an enlarged heart that could lose its ability to pump. The symptoms include chest pain, breathlessness, low energy and bluish lips and skin. According to the PHA, people can live with the disease for 15-20 years and sometimes longer.

“I’m starting to notice some of the symptoms. I can’t keep up with my friends. I’m tired,” Lauren said.

The teen said she had to give up many things she enjoys, including the neighborhood swim team and family ski trips, because of the PH. However, she still continues her interest in art by taking classes at the Fine Arts Institute of Edmond.

“We’ve been avoiding and denying what we are really dealing with for a long time,” said Melissa Johnson, Lauren’s mother.

Even though her parents had talked to her about PH, Lauren said she didn’t really began researching PH and the PHA until her high school, Edmond Memorial, was looking for a charity to raise money for during SWINE week.

“It was the first time I really knew what the disease was,” Lauren said. “I decided I wanted to do something to fight back.”

Her first fighting tactic is to have a fundraising event, “Painting A Stroke of PHenomenal Hope,” raise money and “aid the PHA’s efforts to provide patient support, expand medical research and disseminate the latest information to the PH community and medical professionals.”

Lauren said many people, including those without a disease, lead efforts to support cancer research.

“This disease is just as bad as cancer,” she said. “Since PH is so rare, the only people doing anything are those that have it.”

The event will include a carnival, silent auction, artist demonstrations and more from 1-5 p.m. Aug. 16 at Memorial Road Church of Christ. Square dancers will perform at 1 p.m. and the artists will begin drawing at 2:30 p.m. Their finished artwork will be auctioned off in a live auction.

Participants also can buy $1 tickets for a 50/50 pot. The winner of the drawing will take home 50 percent of the proceeds from the pot. The other 50 percent will fund the “Normal is Overrated Award,” which Lauren created to give to a person with PH whose personal life has greatly been affected by the disease.

“I hate the word ‘normal,’” Lauren said. “There really is no such thing.”

Melissa Johnson, Lauren’s mom, said whenever they get bad news at the doctor they do something fun, including shop. She said her daughter wants to give someone else that same opportunity through the award.

Lauren said she chose a “Sweet 16” theme for the event with a focus on painting to coordinate with her age and interest. It’s no surprise that her goal is to raise $16,000.

A lot of Lauren’s inspiration for the event came from people she met with the same disease at a national PH conference. She met an 11-year-old boy, Julian, who has two pumps and is hooked up to oxygen 24 hours a day. Lauren said the event is in honor of Julian and in memory of Katie Hill, a local mom who died from PH in December.

Melissa said people typically live eight to 10 years after being diagnosed with the disease. Lauren was diagnosed when she was 3-years-old.

She was playing around in the bath tub and swallowed water. Lauren said she told her mother her chest hurt. Melissa, thinking her daughter might have asthma, took her to the hospital. At 3 a.m. in the morning, she finally asked the doctors if she could take her daughter home soon. She was then told her daughter was very sick.

Nine doctors saw Lauren and ultimately found a hole the size of a quarter between the top two chambers of her heart and PH. Melissa said the doctors hoped if they repaired the hole the PH would go away.

However, when Lauren was 11 years old she needed her tonsils removed. The doctors wanted to check her PH levels before she underwent anesthesia. They found that her PH level had gone from mild to severe.

Now, Lauren wants to focus on making people aware of PH. While there is no cure for the disease, if it is diagnosed in its early stages, medication can slow it down.

The teen’s ultimate goal is for the three Edmond high schools to battle each other during their fundraiser weeks to see who can raise the most money for the Pulmonary Hypertension Association.

Melissa said they have finally moved past the “why” and are just trying to do something to make a difference.

“She’s been an inspiration to me,” the loving mom said. “I just know she’ll be an inspiration to everybody else.”