PHA Mentors send e-mails from the heart...

Here is a guest blog from Emma Bonanomi.  Emma has been working on developing PHA's new targeted programming for newly diagnosed patients, young adults, patients with associated diseases, family members of adult patients and family members of children with PH.  The newest step is PHA's mentor program. Here's what she writes about it...

Some say letter writing is a lost art. Tell that to the patients, parents and spousal caregivers who recently signed up to spend hours at their computers each week, emailing carefully crafted hope and encouragement to people living with PH. With precisely 26 mentors poised and ready to write, there are as many pen pals on the PHA Mentor team as there are letters of the alphabet. This is an apt coincidence for a group of people who make such powerful use of words.

From Anna in Colorado, living with PH, scleroderma and lupus; to Bill in Boston, with a teenage daughter who was diagnosed with PH in kindergarten; to Colleen in New York, diagnosed with PH in 1975 and eager to answer questions about her experiences with supplementary oxygen, there’s no doubt that the PHA Mentors represent a broad range (if not the A to Z!) of backgrounds and experiences.

Yet like so many members of our growing community, each mentor has a deep commitment to helping other PH patients and caregivers that makes them more alike than different, despite their various ages, associated diseases and hometowns around the globe. This is a set of knowledgeable and caring individuals who value the solace of thoughtful language and shared experience. They are prepared to do what it takes to share their hope and courage with members of the PH community who are looking for help finding information or for a virtual shoulder to lean on.

Take Joni, a loving husband and father in Jerusalem whose wife was diagnosed with PH in 1998. On top of his commitments as a caregiver and as chairperson of PHA Israel, Joni was so dedicated to helping other PH caregivers that he stayed up until 3 a.m. Israel time to participate in a mentor webinar training. And take Liz, a PH patient from North Carolina who drove 30 miles to the nearest McDonald’s for Internet access to prepare for the Mentor Program while she was receiving treatment in Minnesota.

Why do these volunteers make such sacrifices to do what they’re doing? Joni says, “I love to help other caregivers … and hopefully help them appreciate the positive aspects of their situation." Liz says, “I am happy, positive and motivated to do all I can to help others deal with our disease." To these PHA Mentors, who provide support through words, sentences and paragraphs, hope is more than a motto. It’s the air they breathe and the driving force that keeps them striving to reach more people affected by PH.

Having exchanged quite a few emails with these mentors as we prepared to launch this program, I can let you in on a little secret: their brand of hope is contagious. But you don’t have to take my word for it. Email a PHA Mentor and find out for yourself.

Visit www.PHAssociation.org/Mentors to email a patient, parent or caregiver mentor. (Mentors are available for case-by-case questions or for email relationships up to three months in length. Free PHA website sign-in is required to view mentor profiles.)