Many people are avoiding unnecessary physical interactions to limit the risk of spreading or contracting COVID-19. But sometimes physical isolation can lead to feelings of loneliness, anxiety or depression. As the Pulmonary Hypertension Association (PHA) monitors the evolving coronavirus situation, we urge the pulmonary hypertension (PH) community to remain united and connected.
Here are five ways individuals with PH, their families and caregivers can stay in touch without putting themselves at risk:
PHA administers eight Facebook groups that connect members of the PH community. PHA staff and volunteers moderate the groups to prevent misinformation about PH being posted. Find the right group for you:
- PHA Long-Term Thrivers “I’m glad I have a place to talk to other PH patients like me,” a member of the group says.
- PHA Generation Hope: Young Adults
- PHA PH Plus: Associated Conditions
- PHA CTEPH (chronic thromboembolic PH)
- PHA Teens
- PHA Parents of Kids with PH
- PHA Caregivers
- PHA Newly Diagnosed “The newly diagnosed group members are very respectful and objective,” says a member who had tried other PH Facebook groups.
A mentor is an experienced, trusted adviser. “When my son was diagnosed with PH, I asked my mentor questions, and she answered them. I loved the experience,” one parent says. Contact an experienced, trusted fellow patient or caregiver by email to get information, swap stories or connect now.
Telephone Support Groups
PHA’s monthly telephone support groups are like in-person meetings. They have volunteer support group leaders, new people join every meeting, “regulars” participate and members check in about how they are doing and offer support, tips or information to each other. The only difference is that you call in instead of going out. The meetings allow people to connect by phone if they can’t in person. It’s a “great way to connect with other patients living with this disease,” a longtime attendee says. Check out the meetings list to see the one that is right for you:
- Patients (fourth Thursday)
- Caregivers (third Wednesday)
- CTEPH patients/caregivers (third Tuesday)
- Bereaved community members (second Thursday)
- Parents of children with PH (second Wednesday)
- Young adults with PH (fourth Tuesday)
Attendees must register for each call, so leaders know how many people to expect. Register for the next telephone support group meeting here.
PHA Support Line
The PHA Support Line is a toll-free number any patient or caregiver can call any time. The support line is a way to connect with an experienced, trained community member volunteer who is ready to listen or answer questions. “I was given hope and information about finding the best qualified doctor for the disease,” a recent caller said. Call 800-748-7274.
Local Support Groups
While in-person meetings aren’t advisable now, your local support group leader is a great resource and would love to hear from you. Leaders can organize video or teleconference meetings. Reach out to let your leader know how you’re doing and whether you’re interested in digital or phone meeting. Contact your local support group leader.
For more information about COVID-19 and PH, see our web page.