Estella Medina couldn’t do much physically when she was diagnosed with pulmonary hypertension. She depended on her husband and children to pick up the slack at home. He parents and sister made sure the house was clean and the family had food to eat.
The family’s assistance was critical at a time when Estella’s disease was difficult to manage. But she found another form of aid that was equally important: Pulmonary Hypertension Association support groups.
Estella learned about the support groups about a year after her diagnosis, when neither she nor her doctors knew much about PH. “It wasn’t until I was sent to Houston [for treatment] that I found out about PHA and its support programs,” she recalls.
At first, she couldn’t attend support groups in person, but she found information and connections through PHA’s Facebook support groups.
“I no longer felt like I was living my last years of life,” she says. “I found a lot of members that had been living a long productive life with this disease and not just existing.”
Now that she attends support groups in person, she has learned from informative speakers who share “lots of information about the disease.”
The groups also are helpful for finding people with whom she can talk about odd side effects and symptoms, connect with, and “not feel crazy.”
Today, Estella is a leader the El Paso, Texas, support group, where she sees people who have been diagnosed for more than 20 years “give new patients and support group members a sigh of relief.”
Do you have the support you need to manage the challenges of living with PH? Connect with a support group to make connections and learn from experts. Find a support group near you.
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