Family story

Hope for those living with PH, from the lessons of others

By Erica Huntzinger, Daughter and Niece of PH Patients

Erica Huntzinger Erica's mother and aunt as children

My mom passed away from pulmonary hypertension in 2009. She had been misdiagnosed most of her life, like many other people, and when she was diagnosed in 2005, the condition was not well understood, treatment options were very limited, and hope didn’t seem to fit into the scenario. As a daughter I had already accompanied my mom to countless doctor appointments over the years, sat at the bedside in dozens of ER visits and hospitalizations, offering emotional and moral support, and like so many other family members, tried to understand what she needed as a patient and how to make sure those needs could be met. When my mom passed away in 2009, my dad and I promised we would try to do something to help other patients and their families, so that my mom’s experience could help others. This led to our participation in a market research study and other efforts.

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. Her doctors went ahead with the testing and screening and came back with a definitive diagnosis of pulmonary arterial hypertension, just like my mom had.

The good news is that today the condition is better understood than when my mom was diagnosed in 2005, and there are medications approved and available now that were not before. My aunt can make the changes and adjustments that will help her manage the condition, and go on living her life as fully as possible.

As a daughter and niece, I have hope of my own. I hope my aunt’s journey with pulmonary hypertension will be different than my mom’s was. I hope it will be an easier journey for her. In some ways it already is, and I hope it stays that way.

As someone with an education in public health and a professional background in healthcare, I also have hope. I have hope that while research continues, the healthcare delivery side of things will accelerate in parallel so that every single person working in the delivery of healthcare will understand what to do when a patient presents with PH symptoms, so that patients can be correctly diagnosed at an earlier stage, and so that the cycle of misdiagnosis can become a thing of the past. I have hope that the PH community will continue to grow and strengthen, and I have hope that more and more patients’ journeys with PH will become easier and more manageable into the future, as we all move forward together toward the day when there is a cure.

Until then, there is a lot of work to do. If you are a family member of a PH patient reading this right now, I would encourage you to get involved with at least one volunteer initiative or event with PHA. Let's all move forward together.

submitted 2013



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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.