Why I help bring light to the social disparities PHighters face

My advocacy is aimed at improving public awareness as well as treatments

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by Jen Cueva |

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“I often wished that more people understood the invisible side of things. Even the people who seemed to understand, didn’t really.” ― co-author Jennifer Starzec, “Determination

Having pulmonary hypertension (PH) can be incredibly isolating. Because the disease is rare, finding others who understand and can relate isn’t easy.

Our understanding of rare diseases is limited, so anyone who has them has to manage symptoms along with the frustration of not knowing what’s happening. Every doctor’s appointment feels like a guessing game with no answers. Treatment is a revolving door of trial and error before eventually finding something that works.

To make matters worse, medical professionals often need more awareness about rare diseases, making diagnosis and treatment even more difficult. We must be advocates for ourselves and research our conditions to best support our health.

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But we face emotional challenges as well. Common social stigmas hurt those of us in the rare disease communities. People may not understand what we’re going through, or they may​​ make assumptions or comments that can be painful. Sometimes it feels like we’re fighting an uphill battle trying to prove that our symptoms are real. This can lead to anxiety and depression, which only compound the issue.

People with rare diseases want a sense of understanding from those around them. We want to be heard and taken seriously. And most of all, we want to be accepted for who we are.

Many able-bodied people don’t understand that those of us with rare diseases face a difficult journey. At first glance, I may look like a “normal,” functioning, adult woman. However, if someone looks closer or notices my portable oxygen concentrator or the disability license plate on my vehicle, they may stare. Once my hubby, Manny, gets my wheelchair out of the back, we get more glares.

It can be frustrating trying to educate relatives, friends, and members of the general public about PH. They often confuse it with high blood pressure (hypertension), whereas PH is more complex; it’s a life-altering rare disease with no cure. It’s not their fault, though. No one truly knows what others are going through unless they’re enduring something similar.

Living with PH has been a journey of emotion and learning for me, filled with highs and lows. Through my experiences, I strive to increase awareness of PH and the greater rare disease community. I’m passionate about helping people understand the various social disparities that come with PH. Hopefully, those diagnosed after me will not face the same emotional challenges.

Additionally, I hope that through better education and medical information, more people will have access to improved treatments and eventually cures. With this goal in mind, I’ll continue to work hard toward building a brighter future for all of us living with rare diseases.

No single person with PH can tell the whole story. It’s vital to bring together the voices of everyone with a rare disease. Together we are stronger and can create real change.

I hope that as I raise awareness and share my story, others with PH will feel less isolated and have the resources they need to manage their condition.

Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


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