CAREGIVERS, FAMILY
AND FRIENDS
What can I do?
To help your loved one with PAH, you can:
– Offer to drive them places.
– Help schedule appointments.
– Look into support groups.
– Learn all you can about PAH and stay up-to-date. Share information your loved one may not know.
You may feel uncertain about your role in your loved one’s support team. You may wonder if you’re doing enough. This is normal. Don’t be afraid to ask if there’s something else you can do.
One thing I wish I could tell everyone is that you should try to put yourself in the other person’s shoes. You don’t know how sick another person is, so try not to judge them.
– Tim, PAH Caregiver
Be there for whatever comes next
Your loved one with PAH will be making lifestyle changes, and your support will be key to a successful transition. In cooperation with a specialist, modifications to diet and exercise may be needed. Learn how support groups can help lead to better disease management.
What’s my role?
Listen to their stories without judgment or assumptions. It is important to hear from your loved one about their experiences to understand how to better support them. Managing a daily schedule can be overwhelming and stressful for someone living with PAH. When there is too much on their mind, help to organize their thoughts and keep track of upcoming appointments, events and reminders.
NOT SURE WHERE
TO START?
Patient advocacy groups can be a great resource for additional information and provide opportunities to connect with the PAH community. They offer in-person and online support groups and hold community events throughout the year.
What to know about your loved one with PAH
People with PAH need the support of loved ones like you. Understanding the disease will help you understand the fears and anxieties felt by your loved one, putting you in a better position to provide support.
For insights that may help people who are earlier in their PAH journey, click on “Newly diagnosed with PAH.” To read about people who are further along, click on “Further along in your journey.”
EVERY SUPPORT TEAM SHOULD INCLUDE A PAH SPECIALIST
PAH, a type of pulmonary hypertension (PH), is an uncommon but serious disease. There are doctors who focus on the diagnosis and management of PAH.