Design Your Own young adult Support Group

A Guide for Young Adults...and the Young at Heart

LindsayWebster’s Dictionary defines a support group as “a group of people with common experiences and concerns who provide emotional and moral support for one another or sustain each other by discussing problems affecting them.”

Start by Attending a General PH Support Group

One of the first things that my doctor advised me to do when I was diagnosed in 2007 was to get in touch with local support groups, and so I did, almost immediately. I started attending my local group’s meetings in southern Colorado as often as I could and then, in the summer of 2010, the opportunity arose for someone to take over as leader.

Recognizing the physical handicaps that this disease had placed on so many, I figured that I would put my youth, energy and abilities to good use. It became my personal mission to do all that I could to support PH research and become an active member of the PH community. The support that I had experienced from my local support group made such a difference in my life and inspired me to try to give some of that support back to others.

How I Got Started

I have 12 years of experience working with people of various age groups, ethnic backgrounds and developmental levels, and my work, volunteer experience and education have taught me that people are all unique individuals requiring very diverse forms of attention and support. With this in mind, last year I set out with some like-minded support group members to start a different kind of group. This group was designed to complement what we already had going and as an alternative to local patients whose needs weren’t met by the traditional support group. We launched an “Under 35” support group with the idea of meeting once a month, face-to-face, with younger individuals willing to talk about their struggles and challenges as a young adult — dating, school, and working with a chronic illness.

“The Front Range PHun Lungs,” as we called the group, has now become an interactive support group that meets at various locations and serves as a social club for patients, caregivers, friends and family — but also addresses specific issues of different populations when needed. It is led by a core group of patients, young mothers, teachers and counselors who offer support to members of the community in need of advice, a visitor, a social gathering, a phone call or education.

Why Should Young Adults Meet?

There are so many different ways that we, as patients and caregivers, can offer support to one another. All ages need support — and not necessarily the same kind. Consider school-age children who just want to fit in. They struggle with not being able to do what their friends can like exercising in PE class or playing on the playground. What about teenagers? They have to deal with peer pressure, wanting to be accepted and making positive choices for their health. There are also young adults who have questions about relationships, the future, sex, the possibility of children and being considered “disabled.” At times, patients and families just need an outlet where they can be themselves without limitation.

That is what the PHun Lungs group is all about. The group recognizes the differences in various populations’ struggles and respects them by meeting their individual needs. For example, if someone in the group needs an advocate to help deal with a difficult situation, that is what we become. If someone needs assistance organizing a fundraiser, we take on that role. We consider ourselves a stable and accepting support system, a “PHamily” without question or hesitation.

Make It Fun!

We like to base our gatherings around fun activities as often as it is appropriate. While we launched with young adults in mind, at this point the group is for all ages, not only the young but also the “young at heart.” Although it can be a challenge to coordinate, meeting in person is always the goal. And remember, support groups of all structures and sizes are important. Support can be a large community with a similar interest or issue or it can be you, just sitting at a kitchen table with three friends.

As a Generation Hope member and support group leader, I’d like to offer some ideas that have been shared with me to those who are considering starting groups geared toward young people dealing with PH.

Ideas for Support Group Activities

Ideas for Topics and Speakers

  • Holiday parade and hot chocolate
  • Field trips – aquarium, museum, movies, zoos, parks, picnics
  • Team building/field day activities
  • Education games at a patient’s school
  • Moments of silence at every meeting for those we have lost to this disease
  • Home or hospital visit for sick members
  • Game nights
  • Dinner and a movie
  • Group date nights
  • PH Jeopardy
  • Learning and sharing coping skills
  • Casino night
  • Sleepovers
  • Craft meetings
  • Craft tables at local fairs
  • Representation at health fairs
  • Travel groups/road trips/day trips
  • Seasonal activities – looking at lights, picking out pumpkins, farmers markets
  • Herb gardening
  • "Mommy and Me"/"Daddy and Me" activities
  • Bowling
  • Card leagues or tourneys
  • Pool tourneys
  • Video game challenges
  • Play dates for members with children
  • Karaoke
  • Birthday and diagnosis anniversary parties
  • Pet pal meetups
  • Scrapbooking meetups
  • Concerts/sporting events
  • Amusement parks (yes, it is possible!)
  • Monitored exercise group/chair yoga/therapeutic recreation activities
  • Genealogy/family trees
  • Bake sales
  • Cooking classes
  • Celebration of group members slide show
  • Mentoring/volunteering in your community
  • Flash mob
  • Luncheons, BBQs, and potlucks
  • Photography, music, and other shared interests
  • Mind benders/puzzles/brain game
  • Introductions, topic ideas, what members want to get out of the group
  • What is PAH?
  • What is PHA and what can it do for you?
  • Working with PH
  • Rights of disabled workers
  • Social security
  • Insurance info and management
  • Dating/socialization/dating sites/matchmaker
  • Fluid and sodium management
  • Nutrition/dietician
  • Importance of exercise
  • How to conserve energy
  • New medications and therapies
  • Fall prevention
  • Patient advocacy
  • Planning ongoing fundraisers
  • Special events
  • PH and the heart
  • From grief to hope
  • Stress management
  • Coping skills
  • Alternative medicines and therapies
  • Acupuncture and massage
  • Laughter therapy
  • A nurse's role in a specialist's office
  • Pulmonologist/cardiologist
  • Caring Voice Coalition or other assistance programs
  • Cardiac/pulmonary rehab
  • Traveling with medication and supplementary oxygen
  • Switching from one medication to another
  • Advocacy and awareness
  • Tips to surviving heat, humidity, altitude
  • Surrounding area group meetings, events and activities
  • Play any of PHA's webinars
  • PH clinical trials and studies
  • Programs in your community for the disabled or those in need of assistance
  • Spiritual advisors
  • Transplantation


Interested in Starting a Support Group for Young Adults in your Area?

By Lindsay Collins,
PH Patient & Support Group Leader


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