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CTEPH Advisory Board

PHA Advisory Boards

The CTEPH Advisory Board helps PHA to strategize, plan and gather feedback on issues related to those affected by chronic thromboembolic pulmonary hypertension. The Advisory Board makes recommendations to PHA about new and existing education, services and programming to meet the needs of CTEPH patients and their families. The Advisory Board meets quarterly.

Submit a question or comment to the CTEPH Advisory Board

CTEPH Advisory Board Job Description (PDF)

Marilyn H

Marilyn H

I was diagnosed with CTEPH in June 2011 after several months of being treated for an asthma flair when I actually had numerous clots in both lungs. I was invited to join the advisory board in 2014 and attended the International Conference that year. This year I attended the Conference in Dallas. I have been on Adempas for 2 1/2 years. I had a full workup last year by my new PH specialist which showed that my clots are not amenable to surgery but my pressures have all returned to normal. I still use O2 at night but don't need it the rest of the day.

Noel H.

Noel H

I was diagnosed with PH in May of 2008 with massive blood clots in both lungs. I was not a candidate for the PTE surgery. The PH community is special to me and I found that I wanted to raise awareness of this disease, both in the community and medical field. In May 2014, I spoke at the American Thoracic Society's annual convention as a Patient Speaker. I am the co-leader of a PH Support group and enjoy meeting with people who "get" this disease and to provide a positive environment for real support and education. I met with my congressman to ask that he support the Pulmonary Hypertension Research and Diagnosis Act (H.R.2073).
Heidi

Heidi K

In 2015 I was finally diagnosed with CTEPH. While that was a scary time in my life, it was a relief to finally have a name to my symptoms. My PH specialist put me in touch with PHA, which was instrumental in getting me the information I needed to cope, and a listening ear by someone who had experienced CTEPH. As an advisory board member, I can help PHA expand resources for the CTEPH community and help others on their journey. I'd like to be a beacon of hope for those who may have lost their way.

 

Martha K

Pam K.

Pam K

I was finally diagnosed with CTEPH in September of 2014 after being short of breath for years. I had PTE surgery in February of 2015 and can breathe.  Being part of the PHA community has been a huge part of my healing journey. I hope to share my experience so that others have CTEPH awareness.

Yanny L

Yanny L

My name is Yanny López from southwest Puerto Rico, Caribbean Island. Born, raised, and still living in Puerto Rico. I am 39 years old, married and have one child. I have been a PH patient since 2008 when I had a DVT that affected my lungs. I've been using oxygen 24/7 since then. I was misdiagnosed for 6 years. In 2014, I changed my doctors and it has been great. I've known about PHA and went to Dallas Conference in 2016, I learned a lot. I volunteer for leadership in my country to help others know more about this rare disease and to fight for the cause. We want the cure!!! #Heart2Cure

Donna S.

Donna S

As a pulmonary hypertension/CTEPH patient I look forward to serving on the board. Before I was ill, my doctoral project was in communication between physicians and nurses intentioned to benefit patients.  Building on all of my background even while facing limitations imposed by the illness, my goal is to impact communication for patients and the professionals who serve. Photo was taken before my illness.

Lisa

Lisa T

My name is Lisa Thornton and I was diagnosed with PAH in April, 2014, however I also have a rare clotting disorder (1 per million) and repeat CT scans & VQ scans showed multiple small clots in the distal alveoli of the lungs, therefore my diagnosis changed to inoperable CTEPH. I was working part time as a Family Nurse Practitioner and doing tele-health for Children's Healthcare of Atlanta from my home computer. I was enjoying life as an aunt, church member, daughter, friend, and pursuing a lifelong dream of adopting and was only six months away from being a "mommy". Unfortunately, this came to a screeching halt upon the diagnosis of severe PH & heart failure. I've spent over 315 days in the hospital since diagnosis and have had to put many of my joys, love, passions, & dreams "on hold" in order to get better control of this disease. We all face different struggles in life and sometimes it's hard to make sense of suffering. Regardless of the "deck of cards" that have been dealt, I want to "use them/play them" to the best of my ability (encourage other patients, help increase awareness among my colleagues in medicine, fundraise for PHA, and live life to the fullest). I'm excited to be part of the CTEPH Advisory Board and pray I can make a difference!

 

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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.