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Patient Story

Aine's Story

As told by her family

"We know that had the doctors looked further into just that one symptom -- shorness of breath with exertion -- or had the cardioligist seen her for a follow up; or had they not ignored low blood stats; or had they not labeled her with anxiety; or had the pediatrician followed up where the specialists left off, the would have found pulmonary hypertension...a lung transplant could have saved her lfie if only they hadn't ignored her."

Aine died on August 10, 2010. She was eight years old. Her death was caused by a disease called Pulmonary Veno Occlusive Disease (PVOD). Although this disease is uncommon, it is imperative that people know about it as it is a cause of pulmonary hypertension (PH). PVOD presents medically as PH. It is thought that PVOD might be the culprit behind some cases of idiopathic pulmonary hypertension. In our case, that was true.

AineWe are writing our daughter's story today to explain what can happen if PH goes undiagnosed. We lost our daughter but others shouldn't. Aine was a beautiful girl who was very sick. We had spent the last year of her life (2009 to 2010) trying to sort out why she didn't feel well, why she was so thin, why didn't she want to eat, why she complained of not being able to get her breath. We watched her slow down physically, finding new hobbies like reading lots of books instead of riding her bike or playing soccer. She had many appointments with several doctors, specialists in the fields of gastroenterology, pulmonology, cardiology and her pediatrician. Wrongly, she was given a clean bill of health. Physically she was just fine, they told us. It's anxiety they said. Nothing was wrong with her, she's just anxious. Over and over again we were told this. We continually relayed to her doctors her shortness of breath with exertion and it was ignored. But they said she was OK. And we trusted them.

We know now that had these doctors looked further into just that one symptom, shortness of breath with exertion, or had the cardiologist seen her for a follow up, or had they not ignored low blood sats, or had they not labeled her with anxiety, or had the pediatrician followed up where the specialists left off, they would have found pulmonary hypertension. Then they could have found PVOD. A lung transplant could have saved her life if only they hadn't ignored her.

Don't let other kids die, too, because the medical profession ignored what was right in front of them.

 

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NORD

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.