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I don’t really need a Support Group, do I?

Are you shy? Do you hesitate to attend a local PH support group meeting for one reason or another? There are thousands of patients around the country attending local support groups – each one motivated by a different need or reason. We asked patients and caregivers what they get out of support groups, read on to see why you should come!

Marilyn Duty

"I have met wonderful people who were anxious to share their stories regarding this illness. I realized very soon that this group would help me to see that a diagnosis of PH does not mean you cannot have a life that is worth living. This disease binds us together."

Marilyn Duty
Long Beach, Calif.
Pulmonary Hypertension Support Group member

Carolyn Darby Sheehy

"I think my support group is awesome! I love attending the meeting and catching up with members that I haven't seen in a month. There are members of our group that see each other on occasions other than the support group meetings, you know like family."

– Carolyn Darby Sheehy (pictured, left)
Tampa Bay, Florida
Pulmonary Hypertension Support Group member

Brandi Stickney

"I get the feeling of compassion, understanding and complete acceptance. I know I am never alone and will always have people I can complain or cry to and they know exactly what I am going through and how I feel."

Brandi Stickney
Portland-SW Washington
Pulmonary Hypertension Support Group member

Dawn Apio-Manoa

"We're ohana, family. Knowing that I'm not alone in my struggles is such a plus in life because I'm the only one with PH in my family. Sure, they "understand" or sympathize and are supportive, but meeting with others actually are going through the same struggles I am makes me feel better."

Dawn Apio-Manoa
Hawaii
PH Support Group Leader

Donald brings joy to his group, dressing up as Santa for group holiday dinners!Donald brings joy to his group, dressing up as Santa for group holiday dinners!

"As a caregiver, I attended the support group meetings with my wife (Jeanne) and got a lot of good information from the meetings. Since Jeanne passed in October, I have attended the meetings to help other caregivers understand what they can do. I made a lot of friends at the meetings and learned a lot of good information about PH. I intend to keep on going to meetings."

Donald Overbay
Dallas, Texas
Pulmonary Hypertension Support Group Member

Ijeoma Harris

"I learned about a lot of local support [resources], like how to get a handicap tag and parking tips… and getting personal tips on things like showering."

Ijeoma Harris
Boston, Massachusetts
Pulmonary Hypertension Support Group

Geal Abella Goldbeck

"I could not have gotten through the surprise of PH and dealing with it without my local support group meeting, [the group leader, patient] Evette Britton, or all my family, friends, docs and nurses."

Geal Abella Goldbeck
Nashville, Tennessee
Pulmonary Hypertension Support Group Member

Venita Harris

"Our support group is about walking alongside and recognizing that a cord of three is stronger than one strand… so our support group goal is to educate, equip and to encourage members managing PH."

Venita Harris,
Central New Jersey
Pulmonary Hypertension Support Group Leader

Doug Taylor

"Becoming a support group leader has be incredibly beneficial to me as a patient. I have learned so much more about Pulmonary Hypertension as a leader than I would have simply as a patient. It is so gratifying helping my members. One of the best ways to feel good about yourself is to help someone else. As a leader I know each month I am helping not just one person, but 20 to 30 others!"

Doug Taylor
Palmetto, South Carolina
Pulmonary Hypertension Support Group Leader

Dan Ipock

"We just had our first meeting. There were so many NEW patients! It was exciting to be able to share all of the PHA resources with them."

Dan Ipock
Northeast Oklahoma PHighting For Hope
Pulmonary Hypertension Support Group Leader

Benita

"For me, I find that helping others who have this disease is a reward. I basically know what they're going through & have learned A LOT about the other things they struggle with that I don't. (Schleroderma, RA, Reynauds, Lupus, Connective Tissue Disease, Sarcoidosis, Pulmonary Fibrosis.) I also do what I can to make them smile & keep them posted on anything that PHA has to share with us!"

Benita Kosiara,
Chicago, Illinois
Pulmonary Hypertension Support Group Leader

Colleen Schnell

"I just have to say that starting a support group was a very scary thought to me when I was first approached about it about 10 years ago (can't believe it's been that long!) But, being a leader has been so important to me. I'm so blessed that I have been able to help others with this disease and let them know they are not alone."

Colleen Schnell
Buffalo/Niagara Falls, New York
Pulmonary Hypertension Support Group Leader

   
   
   

 

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.