Patient story

Diane AdkinsDiane Adkins

After being diagnosed with PH in 1995, I have continued to continuously work outside the home. I travel about 50,000 to 60,000 miles per year. I put in about 60 hours a week. Part of my job involves training, therefore, I look forward to training the 800 volunteers at conference. I might be able to put a different spin on things due to my work experience.

One bad thing about working is that I don't have much free time to relax or devote to PHA. The position of Volunteer Coordinator is something I can do sitting in a hotel room which I do quite frequently. I never wanted to quit work just because I got sick. I didn't want someone to say to me, "You can't do this job." I guess I'm not ready to "get out of the action." I want to lead as normal live as possible. I am extremely independent and I don't need a lot of care.

Getting ill has made me realize that life is so short. It has probably brought an inner strength and it has focused me on others rather than myself. Through PHA, I have met the most wonderful and devoted people in my entire life. My own family is so uninvolved in my life let alone my current health crisis, that it is so amazing to see the care and concern that family member in the PHA group have for their relatives. I have never seen such devotion in my entire life.

When I am ready to reduce my work load, I want to devote more time to PHA. My job provides me health insurance and disability insurance therefore it is impossible to leave this position. Rino, Judy, Ed, Pat, Jerry and the rest of the group are the most amazing and caring people I have ever met and I am happy to know them and be affiliated with them.


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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.