URBANDALE, Iowa –An Urbandale couple is working to research a rare disease that has touched their family twice. You've likely never heard of the disease that killed a woman's mother more than two decades ago. Now, she and her husband want to find a way to detect it early.
It's hard for Meredith Wilharber to slow down. She is the mother of two boys, ages 6 and 4. "They are very busy. They like to keep us on the go," she said.
She has learned sometimes she must take a break. "I was short of breath, a lot of dizzy spells, not being able to bend over without being dizzy," said Meredith.
Three and a half years ago she got the life changing diagnosis she dreaded. "For me it was when my mom passed away from it, we had five days. She passed out at a grocery store and passed away five days later," said Meredith.
Meredith's mom died of pulmonary arterial hypertension in 1992 when she was 31 years old. It is high blood pressure in your lungs. Meredith now lives with the chronic disease. "What it is, is the arteries inside your lungs are hardening and the walls are thickening, so your body is basically suffocating itself," she said.
Treatment for pulmonary hypertension has come a long way since Meredith's mom died more than two decades ago. Meredith takes three oral medications each day. The key was her early diagnosis.
Meredith’s husband Randy Wilharber said, "The problem with this disease is when a patient walks into their general practitioner's office, the symptoms that present themselves with this disease are very common to other conditions, COPD, asthma, even the common cold."
The Wilharbers are trying to change that. They started the Blue Lips Foundation in 2015. The organization has hosted six events in three years raising $750,000. They're funding research at Stanford University in hopes of finding an easy way to diagnosis the disease early on. "Our mission is early detection. We need to get patients on medication as soon as possible so they can continue to live a long life,” said Meredith.