Published: November 08, 2008 11:38 pm      

Young Edmondite brings awareness of rare disease to community

EDMOND — For one local teen, November means even more than eating turkey and celebrating Thanksgiving. It also is Pulmonary Hypertension Awareness Month, a disease Lauren Johnson, a sophomore at Edmond Memorial High School, was diagnosed with when she was 3 years old.

The 16-year-old has made it her mission to do as much as possible to raise money for the Pulmonary Hypertension Association and educate people about 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. Symptoms include shortness of breath with minimal exertion, fatigue, chest pain, dizzy spells and fainting. Currently there is no cure for the disease. People can live with the disease for 15-20 years, and sometimes longer.

In August, Johnson worked with family and friends to host a community carnival and raised $12,500 for the PHA. Lauren and her mother, Melissa Johnson, also have participated in panels for two “webinars” for the PHA.

Lauren was recognized Oct. 18 by Dr. Rino Aldrighetti for her fundraising and media coverage efforts at the first Colorado Pulmonary Hypertension Fundraising Gala.

PH awareness is represented through a purple ribbon.

“I want to see more purple ribbons,” Lauren said.

Purple ribbon pins can be purchased online for $5 at the PHA store at www.phassociation.org.

Her current goal is to get the PHA approved to be the designated charity for Swine Week, Memorial’s annual fundraiser, this year. Johnson said she already has gone before the Student Council with a request.

Melissa Johnson said most people aren’t diagnosed with PH until they start showing symptoms.

“We caught Lauren’s when she was 3 but she’s still progressive,” Melissa Johnson said. “She didn’t really have symptoms until this year.”

Lauren recently went off a test drug that she had been taking for two months. Melissa Johnson said the drug didn’t appear to be helping and there were negative side effects.

“Her PH was getting worse and they decided to move to more aggressive therapy,” Melissa Johnson said.

The teen recently underwent a surgery to have a central line connected to a major artery that travels directly to her heart.

“It’s like a permanent IV that goes into your heart,” Lauren said.

The IV pump has to be filled every 48 hours, which is a 30-minute process. Melissa Johnson said as the dosage increases they will have to change the pump daily.

Marie Connolly works in the Neo Natal Intensive Care Unit at Mercy Hospital and said people need to be empathetic to every person.

“Sometimes we judge people without knowing what’s going on behind the scenes,” Connolly said. “You don’t know what their story is. Every person has a story.”

She said while Lauren looks like a normal, healthy teen, she still is fighting a chronic disease.

Aside from advocating for the PHA, Lauren said her other main focus is to keep up with her friends. However, the progression of her PH has kept her from school.

But the teen hasn’t given up yet. She said she is just trying to live life to the fullest.