Teen paints hope despite battle with rare disease
Oklahoma City teen paints hope despite battle with rare disease

By Jessica Jackson

Published: August 15, 2008

It's rare, incurable and life-threatening.

Those words hit Lauren Johnson, 16, hard when she read about pulmonary hypertension, the disease she's had since she was 3.

It causes high blood pressure in the pulmonary artery, making it hard to breathe, according to the Pulmonary Hypertension Association.

"I researched it one day, and it shocked me,” said Lauren, who lives in Oklahoma City. "It kind of made me mad, and I wanted to fight back.”

So she decided to put on a fundraiser for an uncommon problem that's as severe as cancer, she said.

"But pulmonary hypertension, nobody knows about it, and the only people to do (fundraising) are the patients or the loved ones of the patients,” she said.

Most pulmonary hypertension patients don't have the energy for such an undertaking, but Lauren and her family were up for the challenge. Painting a Stroke of PHenomenal Hope will be Saturday in Oklahoma City.

"She has hope now, and she wants to fight back,” said her physician, Dr. Dunbar Ivy. "I think that's fantastic.”

Ivy said new medication is becoming available all the time, and his philosophy is to remain realistic but positive.

Melissa Johnson took her 3-year-old daughter to the emergency room after a bath one February. Lauren was complaining that her chest burned.

By 3 a.m., she was ready to take her daughter home.

"I was like ‘well, can we go home?'” she said. "They said, ‘uh, ma'am, you have a very sick child.'”

Lauren said the nurse found a heart murmur, which turned out to be a quarter-sized hole in her heart, creating one upper chamber.

Doctors repaired the hole, but the pulmonary hypertension didn't go away. Before she had her tonsils out in fifth grade, doctors did another heart catheterization.

Her disease had gone from mild to severe.

"And pretty much from that point, I was told to limit my running, my doing sports, and I couldn't be on the neighborhood swim team anymore or go skiing,” she said. "I pretty much had to slow myself down.”

Lauren turned to art instead of sports.

"I didn't really notice too much until this year about the way I felt,” she said. Not "until going to high school and walking the halls and how tiring it got.”

Melissa Johnson said she decided a few years ago to take her daughter to Ivy because he was a pediatric pulmonary hypertension specialist, even though he practices in Denver.

"I think in general, she's doing well,” Ivy said of Lauren Johnson. "It's a battle, but one that we fight together.”

After another heart catheterization in April, she was ordered on oxygen at night.

After that, she started asking more questions. As she found out more, she decided to take action, leading her to the fundraiser.

Lauren said joining support groups and meeting other patients has showed her how important her fundraiser is.

"Seeing the people I could help, it just changes everything,” she said.

"She actually was told by a couple of them how much she inspired them,” her mother said with tears in her eyes.

Deirdre Farrell, Pulmonary Hypertension Association special events coordinator, has helped Lauren gather information for her fundraiser.

"In general, I'm very impressed with how mature and responsible she is for her age,” Farrell said.

Since researching her condition, Lauren said her outlook on life has changed as well.

"You just have to take every moment because you really don't know what is going to happen tomorrow,” she said. "I guess that's all I've been putting in my head since I've really gotten to know what this disease is.”

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