OUr Journeys

Patient Stories — as told by Family & Caregivers

Click the linked names to read the full Journeys

By Erica Huntzinger, Daughter and Niece of PH Patients
My mom passed away from pulmonary hypertension in 2009 ... Fast forward to 2013. My mom’s older sister shared her various health challenges with me and I came to understand that she has been on a very similar trajectory as my mom was many years ago. I suggested to her that she might want to ask her doctors if she should be tested/screened for pulmonary hypertension.

By Amrutha Valli Kavi, Suhrut’s Mother
Our family’s journey with pulmonary hypertension started on January 19th 2013, when our son Suhrut was two and a half years old. Suhrut had been running and jumping at a local store when he suddenly complained of severe pain in his upper abdominal area and then passed out.

By Christina Doak, PH Parent
PHA's 10th International PH Conference and Scientific Sessions in Orlando will be here before we know it. I’m sure parents are mulling over the decision to attend, but for me it is an easy decision. I will be taking my family to Orlando for my fifth Conference and their fourth. There is no other venue at which a family dealing with pulmonary hypertension can receive the same kind of support, emotional connection and education.

Shaye's Story, by her Mother, Teresa Meyers
Shaye was diagnosed with extreme anxiety in 2007, but during the two years that followed her symptoms would continue to get worse. Her doctor would say her heart palpitations, dizziness, sweating, nausea, chest pains and shortness of breath were all due to anxiety. What we would find out later is all of this was caused by something else, something we could never have prepared ourselves for.

PHA does not recommend or endorse any specific physicians, products, procedures, opinions or other information that may be mentioned in these stories. Reliance on any information appearing on this website is solely at your own risk. Stories shared on this website are general information and are not intended to substitute for informed professional advice. Each person is different and as such, may respond differently to treatments, thus the stories are shared with the hope that they may be helpful for those who choose to take a greater responsibility for their own health. Always seek help from a health professional.

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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.