Patient Mentor Spotlight

Liz Brigham

Liz BrighamPH 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. Liz Brigham is one of those mentors, and she shares a little about herself now.

What’s your PH story?

I was diagnosed with PH in June 2004, though I had been symptomatic for at least a couple of years before that. Like so many other PH patients, I was first misdiagnosed by an assortment of primary care doctors who told me I had asthma, job stress, allergies, etc. I finally decided that I knew something was wrong and I was not going to accept job stress as the answer any longer. I did some of my own research on the Internet (scary) and found that my symptoms matched this disease called pulmonary hypertension. After rounds with a few local doctors, I was actually referred to the Mayo Clinic in Rochester, Minnesota, where this diagnosis was confirmed and my journey began.

After I was diagnosed with PH, I was scared and depressed because what I had read about PH seemed pretty bleak. I remember not wanting to plant any perennial flowers in my garden that spring as I was sure I would not be around to see them bloom the following year. I learned that there were support groups in the area, but I decided that those must be depressing pity parties. Boy, was I ever wrong about that!

My attitude changed once I drew up enough courage to attend one support group meeting. Gosh, these folks were not sitting around feeling sorry for themselves. Instead, most of them were living active and meaningful lives, which included friends, family, work, pets, vacations, hobbies, etc. — all the things that bring value to our lives.

So my life with PH changed once I was willing to get over myself and really understand that my life was not PH — PH was just one of the many facets of my life. I soon became a support group leader, later a Patient-to-Patient Support Line volunteer, and finally a PH Email Mentor. It is possible to get over one’s own petty self-absorption pretty quickly when trying to listen to and assist other patients — some of whom have so much more to deal with than I had.

Why should someone email a PH Email Mentor?

There are a million reasons to email a PH Email Mentor. To name just a few:

  • Mentors are PH patient and caregivers who have volunteered to help and who feel they have something of value to offer others;
  • PH Email Mentors have “been there, done that,” and have years of experience and knowledge to share;
  • Should a PH Email Mentor not know the answer to a PH-related question, you can be sure they will check into it and get back to the mentee;
  • PH Email Mentors have many sources for PH-related information that the newly diagnosed patient might not yet know about;
  • Sending an email is quick, easy, and you can do it whenever’s most convenient for you.

What’s your best advice for others living with PH?

Just that: LIVE! We can still carry on very meaningful and productive lives with PH. Those of us who have been diagnosed with PH have the opportunity to take a good hard look at the “whys” of our lives and how we want to really live. For me, this disease has been a gift of sorts. I have been given the opportunity to look deeply at my life and make something out of it. A beautiful song by an artist named Sarah Brightman called “I’ve Been This Way Before” has a line that says, “Some folks never see the light until the day they die.” As a PH patient, I’ve been blessed with the opportunity to try to see the light while I can still touch the lives of others in some meaningful way.

What does being a PH Email Mentor mean to you?

It means so much to me to be able to help alleviate another patient or caregiver’s fear and confusion — especially when that patient or family member is newly diagnosed. PH is unbelievably complicated, and if I can help someone sort out some of their confusion, I am blessed. It takes courage to reach out for help and if I can be on the other end for another patient, my life is made richer.

Read Liz Brigham's Patient Mentor 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.