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PH Plus (Patients wITH Associated Conditions) Advisory Board

PHA Advisory Boards

The PH Plus Advisory Board offers a diversity of perspectives on the numerous associated conditions that many our community members live with in addition to PH. Advisory Board members work to ensure that PHA’s resources continue to grow and become more comprehensive in addressing these associated conditions. They also advise on psychosocial programming for the unique aspects of living with multiple chronic conditions. Members are asked to stay up-to-date with PHA’s operations to ensure inclusivity with regard to their community’s needs and experiences.

Submit a question or comment to the PH Plus Advisory Board

PH Plus Advisory Board Job Description (PDF)

Anna B.

Anna B

Patient

I am not my diseases! Living with PH and Lupus will not define who I am and what I am able to accomplish! I strive to conquer them, and my life. Active in volunteering with PHA and local organizations, I also take college classes for a History degree.

Stacey G.

Stacey G

Patient

"PHA gave me hope, education and a purpose to make sense of my new life with PH."

I have PAH (diagnosed 2006) due to Lupus/Mixed Connective Tissue Disease (diagnosed 2000). Despite both conditions, I have continued to work full time in the realm of Occupational Therapy. Today, you can find me running my online Facebook group "Pulmonary Hypertension-Maximizing your Independence & Function" or treating patients. I spend my free time helping with fundraising and advocacy for PHA/PH patients; and travelling the U.S. by RV with my husband and three dogs. My mantra in dealing with "my so-called PH life" is to be grateful for all that I have, focus on the positives, stay educated and be responsible for the aspects of health that I DO have control over. Having PH and Lupus has given me a better perspective on what is important...to always stop and smell the flowers...and never stop dreaming!

Watch Stacey present as PHA guest expert speaker on a PHA Classroom webinar: Understanding How to Maximize Your Independence for Everyday Living

Colleen S.

Colleen S

Patient

I've had PAH all my life, and have been involved with other PHers for the last 10 years. I have a support group, I host two chat sessions a week, and I'm part of the PHA Mentor program. I love helping others with PH!

 

Barbara G

Patricia O

Patricia O

I have been living with Pulmonary Hypertension since January 2011. My associated disease is Scleroderma and I am also an amputee. My background is Mental Health. Presently, I run a group at NYU. I have also been an Administrator and Rehab Counselor. I hope to bring my listening and communication skills to PHA.

Candy M

Candy M

In July of 2014 I was having chest pain, shortness of breath and lots of fatigue.  I worked 60 hours a week and when I went to work my sister who is a nurse immediately knew there was something wrong and insisted I go to the ER.  The dr. did test and found 60% blockage in 3 arteries and recommended by-pass.  Testing was done and by-pass was scheduled for Aug. 1.  Once on the table I coded 3 times my pulmonary pressure went to 180.  I had been dx with COPD in 2001.

Gloria H

Gloria H

Retired critical care RN, diagnosed in 2008 when my rheumatoid arthritis began. It progressed to pulmonary fibrosis & PH within 6 months. Since diagnosis I served 4 years as county commissioner, sat on 10 or 12 non- profit boards, chairing several, celebrated my 50th wedding anniversary, took 6 cruises & will be taking my 3rd European river cruise in October. I was forced to retire from my job due to my multiple health problems.

I have 2 daughters and 2 grandsons. My outstanding husband wheels me over cobblestones, fills my oxygen tanks, and does everything in the home, and recently took care of me when I broke my ankle, & couldn't walk or drive to m multiple medical appointments.

Paula S

Paula S

I am a 66-year-old, forcibly retired RN. My story began in 2008 when I was diagnosed with Pulmonary Sarcoidosis, and eventually diagnosed with PH. Having personal experience with this disease plus my nursing background, I believe I have much to offer to the group. In addition, I arrived in Chapel Hill, NC, an unfamiliar area, with a limited support system and have been able to make a meaningful life. I am the Triangle NC support group leader and peer network mentor. I’ve spoken twice at the United Therapeutics offices and I have advocated in congress for HR 3520. I am excited at the prospect of helping to improve the life of other PH Plus patients.

 

Fill out my online form.

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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.