Patient Mentor Profile

Merle R.

Merle

Diagnosed in 2002

"I'm a support group leader in Pennsylvania and Ohio. I may have PH but PH does not have me! As is typical for many of us, it took over a year of going from one doctor to another before I was diagnosed with PH (the dastardly disease as I call it!). I have good days (mostly) and not so good days (once in a while) but I always remember there is hope. While this disease can be scary, life with PH is very doable."

About Merle:

  • Lives in Western Pennsylvania
  • Type of PH: Idiopathic
  • Languages: English

Merle feels comfortable discussing her experiences with:

  • infused medication
  • inhaled medication
  • oral medication
  • supplementary oxygen
  • cardiac or pulmonary rehabilitation
  • depression and mental health issues
  • working with PH
  • traveling with PH
  • communicating with family and friends about PH
  • communicating with medical personnel
  • organizing medical records
  • legislative advocacy
  • media awareness
  • local support groups
  • online communities (PHA email groups, message boards, chats)

Contact Merle:

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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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NORD

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.