September 28, 2010 >> back to issue

Things I Found: The PH Community

This week I found something I actually found more than 10 years ago. My cousin and dear friend, Dave Hetland, had just been diagnosed with pulmonary hypertension. He had not even begun his Flolan treatment yet when I found the PH email list (maybe 75 people then) on the PHA website. I wanted to help him find answers and support, so I joined. I lurked for a while, reading but not posting, not wanting to interrupt the conversation since I was just a friend of a patient, not even a caregiver.

But when I finally introduced myself, people were so welcoming and helpful. I found information, support and hope. I even found friends. Dave did not remain on the list, but I did, and if he had a question I posed it for him. If there were items of interest to him, I relayed them. People even asked how he was doing.

I connected with others in the PH community through the email group, online chats, and later, local support group meetings. I do not know how we would have gotten through that time without it.

Today the PH community is much larger, and we have many ways to connect. We have a discussion board, several email groups, hosted online support group chats every day of the week, telephone support chats for parents of PH patients, local support groups, our Patient-to-Patient Support Line, our new PHA Mentors program and more.

There is always someone to connect with here, and there are many ways to connect. If the hosted chats are not convenient times for you, you can even invite others to chat in a room you may create yourself. It is easy and there are instructions on the website.

Sincerely grateful for the Thing I Found: the PH Community. You.


Kathryn Frix

Kathryn Frix
Online Community Liaison

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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.