A pulmonary hypertension support group is a group of patients with PAH coming together to learn about and support patients with pulmonary arterial hypertension. The idea of attending a support group can seem scary and intimidating, Potential participants worry about what types of people will attend and if they will be required to speak during the meeting. Patients that can overcome these fears may be pleasantly surprised by the benefits of attending a group meeting.
Benefits of Attending a Support Group
1. Decrease sense of isolation and improved outlook. Feeling alone and isolated often leads to depression. It is comforting to meet other individuals experiencing the same challenges that you are currently facing. Seeing and speaking to other patients with PAH is more “real” than reading a statistic about how many people are currently living with the disease.
2. Sharing success stories helps propel all members forward. Hearing about how someone else has coped with and overcome side effects of medications, or how another patient traveled to Europe while being on oxygen and treatments for PAH, helps all group members feel more positive and more motivated to work on their goals of treatment.
3. Learn about PAH, treatments, and tips and tricks for living with the disease. Many support groups bring in expert speakers who might discuss the most recent research study enrolling, treatment approved by the FDA, or new tips for dealing with known side effects. They may have speakers from programs right in your community that you never knew existed. Knowledge is power. Learning as much about PAH as possible will help each patient get the best care possible.
If at First You Don’t Succeed….
Every pulmonary hypertension support group is different. Some are run by patient volunteers and others run by nurses or doctors that treat PAH. Some have formal presentations while others have a more laid back discussion. You may not know which type of group you will benefit from the most until you have attended different types. You can be a member of more than one support group. If the first support group you attend isn’t the right fit for you don’t give up. Try, try, try again.
