Patient Mentor Spotlight

Sean Wyman 

Sean WymanPH Email Mentors are patients and caregivers from all over the world, standing by to help patients, caregivers and parents through one-on-one, email-based support. Sean Wyman is both a mentor and a co-leader of Generation Hope, PHA's virtual support group for young adults.

What's your PH story?

I was diagnosed on Oct. 18, 2002 (my 19th birthday). My mom and I were on vacation in Colorado Springs, Colo., and I became really symptomatic. It was as if an elephant was tapdancing on my chest in stilettos. I blacked out twice in 24 hours. My mom brought me to the emergency room. From there it's all a blur. I was in the ICU, then a regular room, and then transferred to Denver to see PH specialists. Since I was such a "well-behaved" patient, they gave me access to a laptop. I found PHA and read the entire site in a night.

I wouldn't say I've made changes to my life; I'm just more aware of how I'm feeling. One of my school friends told me she was envious of me. When I asked her why, she said, "Because of your disease, you get to stop and admire the scenery." I never thought of it that way when I was getting winded walking up hills, but now I do take time to "stop and smell the roses."

When one of my doctors told me I would never be able to work or go to school, I decided to test that theory. PH hasn't really changed my college life - I have changed college life because of my PH. I have increased awareness of PH on campus by giving presentations to classes and student organizations. My goal initially was to become a teacher (my family is full of teachers), but one of my college professors said I had a higher calling. I looked into respiratory therapy, but after taking a few of the classes, I realized I was capable of becoming a physician. I would like to think that I will stay in the world of pulmonary/cardiology medicine, but time will truly tell. After medical school, who knows what I will do. I have some ideas, but I'd like to keep a little mystery about me!

What advice would you give to other young people with PH?

The best advice I can give is, go to school and utilize all of the services! Seriously! I was scared to go back to school after my doctors told me I wouldn't be able to. Ha, serves them right for telling me "No!" School helped me find some normality while doing something I love: learning. The most important thing is to be positive and informed. I found out about special student services and college became a breeze. Someone was always there to advocate for me, or to establish accommodations like rides around campus, special class seating (I like the front row), increased test-taking time, etc.

What does being a PH Email Mentor and a co-leader of Generation Hope mean to you?

It has given me a way to connect with other patients. There are occasions when I need to talk to someone and share an experience, and being a leader in the PH community gives me that chance. The large network being developed is amazing. Every young adult should join Generation Hope. Young adults experience a different set of trials and tribulations than older adults. Questions about relationships, marriage, education, careers and so forth are commonplace in Generation Hope. We share our experiences with each other and come up with better ways to raise awareness of PH in our communities so future friends and families understand what we go through. Being a leader and mentor has been amazing. It's opened my eyes to other experiences, helped me better understand how to work with others and, most importantly, helped me better understand myself!

Why should someone contact a PH Email Mentor?

You should email a PH Email Mentor because we've "been there, done that." Early on, I had people who acted as my mentors. Soon, I became a mentor for children and young adults. I felt that I could connect with them and tell them how to cope with PH and get a sense of normalcy back. The most important thing is to make a connection with someone who's experienced life with PH. Some look at it as a horrible disease - I look at it as a way to be philanthropic, a lifelong learner and, of course, a lifelong PHriend.

Read Sean Wyman's Profile (Sign in required)


Disclaimer: PHA PHriends are available to provide hope and support to PH patients and caregivers. They are not intended to provide medical advice on individual matters, which should be obtained directly from a physician.

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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.