Local women fight rare disease

Two raise awareness for pulmonary hypertension
Nov. 04, 2013 @ 02:40 PM

As Diane Ramirez approached the Thomasville Times tent at Everybody's Day in September, it became apparent she was more than simply a pedestrian.
A few phone calls and a face-to-face visit with Ramirez and her friend Janet Mabe revealed an incredible journey the two women have faced together. They are two of only 30,000 in America who suffer from the extremely rare disease known as pulmonary hypertension.
Ramirez was diagnosed with familial PH in 1987 at the age of 24 after losing several family members to the illness. It took almost three years for her to receive an accurate diagnosis, which is on par with the national average.
"Doctors were looking at me — fit, trim and 24 — shaking their heads," Ramirez said. "I was told everything from a heart murmur to I was suffering from anxiety and needed to see a therapist. I was put on all kinds of medicines, none of them having anything to do with pulmonary hypertension.
"They did a cardiac cath, where they take a look at your heart and lungs, and saw that my pulmonary pressures were high. The same day I had the procedure, the doctor came in, sat on the bed and said... ‘You'll be lucky to live three years and you can't have children.’ "
Mabe tells a story with similar sobering details, though she has idiopathic PH, for which there is no known cause. She was diagnosed in 2000 after collapsing near her home.
"I had teenage daughters by that point, but [the doctors] said it's incurable, very rare, and if you're not on the right medication, your life expectancy is about three years," she said.
Since their diagnoses and ensuing triumphs, Ramirez and Mabe have taken leading roles in an early diagnosis campaign that seeks to reduce the time it takes for doctors to pinpoint the disease.
Ramirez has given a speech at a Congressional luncheon, lobbied multiple local agencies and remains active in trying to save the lives of those who do not know.
To raise awareness for PH, Ramirez and Mabe agreed to walk 100 miles in less than a month. Ramirez walked 75, and Mabe hiked 25. They met this goal on Oct. 16 at the track around Novant Health Thomasville Medical Center, despite the incredible shortness of breath associated with PH.
"For women who are in their early 30s, all of a sudden, taking a shower wipes them out," Ramirez said. "That happened to me. I would take a shower and have to rest an hour or two after I took a shower to get dressed and do the next part of my day."
Her frustration mingled with hopefulness, the 51-year old says she and Mabe arranged the walks as a means to honor those who have lost their struggle and prevent the deaths of others.
"It started with me wanting to do something big for the PH community, just as a patient," said Ramirez. "I'm on a board of trustees. I didn't want to do it as a board member, a lobbyer or an advocate leader, but just as a patient."
Ramirez will be on hand for a Nov. 15 meeting of the Thomasville City Council, where Mayor Joe Bennett will make a proclamation for the city of Thomasville. Nationwide, November is Pulmonary Hypertension Awareness Month.
"A lot of times, by the time people get diagnosed, they are at a point where there is little that can be done," Ramirez said. "Here we are, a quarter of a century later, and it's taking just as long to diagnose. With all the medical technology available, I just find it ludicrous people are being told 'you're just out shape,' 'you need to lose weight,' 'you have asthma.' Getting that initial diagnosis time down, that's what we need to work on."
For additional information on PH, visit the Pulmonary Hypertension Association website at www.phassociation.org.

Staff Writer Daniel Kennedy can be reached at 888-3575, or kennedy@tvilletimes.com.