Volunteer Profiles

Katie Tobias

Pathlight Columnist

9Katie Tobias is a 23 year-old writer, artist and PHA volunteer. She was diagnosed in 2006, during a period she’s described as physically and emotionally intense. Today, she writes a quarterly column for young adults in Pathlight to help other young people get beyond the initial shock of diagnosis.

Katie has written about adjusting to life with a chronic illness, travel, and finding love as a PH patient. She uses the opportunity to write for the PH community as a chance to express herself and inspire other patients her age. Katie writes,

“Living with a rare life-threatening illness is difficult in its own right, but fighting for your life at a young age, when your biggest concern should be what to wear for that hot date on Friday, is beyond words. All the medications in the world only fight half the battle — the easy part.”

Katie makes even the hard parts more bearable for members of the PH community with writing that blends candor, humor and compassion.

Read Katie’s story or check out some of Katie’s Pathlight articles.

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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.