My First Support Group Meeting: Patients Share Their Experiences

There’s a first time for everything! As a PH patient, there's that first time when you meet another patient, speak with a long-term survivor or find a friend on the same medications as you. Many people will experience one or more of these at their first support group meeting.

Patients enter their first support group meeting with vastly different emotions. Some are excited to finally meet someone with the same disease, others are scared, and a few might feel like a fish out of water if the other members are in a different age group or on different medications. Read on as four patients share their first experiences at support group meetings.

Sally Mackey, Sumter, S.C.

“Before my first meeting I was confused and overwhelmed. It was a relief to me to find out other people had caregivers. I had really been feeling guilty about needing help. At my meeting, when I saw that my husband wasn’t the only person who had come along to help, I felt better about my health and needing assistance.”

Lori Funk, Syracuse, N.Y., Support Group Leader

“At my first meeting I was uncomfortable because I'm the youngest in my group. But I get so much information from our group's guest speakers and the wisdom from the others that not only did I keep going back, I offered to step up and be the new leader. I was worried that they wouldn't accept or respect me much because I was the 'newbie,' but they have been so incredibly supportive. Through my support group I know of a woman who has been living with PH for 17 years, and while she's had some really difficult periods, she is doing great right now and still going strong.”

Cindy Kramer, Buffalo, N.Y.

“The other people in the group made it very welcoming. I have a great support group with the best group leader! It has been a blessing to be able to have such knowledgeable and, most of all, sweet, kind and loving gals in my group. I am blessed! I never miss a meeting now.”

LaTanya Dolby, Baltimore, Md.

“I found my group the same month I was diagnosed. They made me feel welcome and made me want to keep coming back. I don’t know what I would’ve done without the others who were there for me during the hardest months of my life.”

Find PHA Support Groups near you or look for upcoming meetings on our calendar.

 

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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.