PH Awareness Is About Telling My Story and Sharing Yours

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by Colleen Steele |

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I’ve been writing, posting to social media, and talking about my son Cullen’s pulmonary hypertension (PH) journey since his diagnosis in 2008. When a heart and double-lung transplant saved him from the disease, I continued to share his story to increase awareness about PH.

But six years of repeating my old stories was feeling like not enough. Once I became a Pulmonary Hypertension News columnist and forums moderator, I was able to also help others share their PH journey. Through them, I’ve had the opportunity to make others aware of new treatments, studies, trials, and their fellow patients’ hopes and concerns.

November is PH Awareness Month and it’s my pleasure to once again lead the “30 Days of PH” project that Jen Cueva, a fellow Pulmonary Hypertension News columnist and forums moderator, started three years ago. The project is an opportunity for patients and caregivers to reflect on their PH experiences and share their stories.

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Many have said that writing about their PH journey and helping others by participating in the project was therapeutic and rewarding. Every story certainly offers something that every reader can learn from, relate to, and maybe even pass on to others.

I believe PH advocacy is most effective when we share our personal experiences and the lessons we’ve learned from others. My advice to anyone is to don’t stop reading or listening to a PH story because it doesn’t seem relevant. I guarantee that in some way, it is or it will. I believe there could come a time when remembering a story you heard will either support you or help you support someone else.

Hearing these stories also might make you open to different treatments, or to be aware of symptoms that you haven’t experienced, but that others have. And it might offer information about transplants to help you or someone make a more informed decision.

Are you struggling physically or emotionally? Reading about how well someone else is doing could offer you the inspiration and hope you need. Maybe it will encourage you to try a new treatment your doctor suggested. Perhaps you will find a relaxation tip worth trying, or a technique to explore to help deal with your emotions.

Is your health in a good place right now? Then perhaps offer an empathetic ear to someone who is struggling. In doing so, you might learn something useful for the future, something that could help you better understand this disease. Knowledge is power. 

Finally, read the remembrance stories. Those who lost their lives to PH are our strongest advocates. Their stories, told by loved ones, remind us not only why we continue to fight for a cure, but why we make the best out of what quality of life we have now. Their stories don’t just focus on how they died, but also on how they lived. 

I read somewhere that advocacy means changing “what is” into “what should be.” I’m trying to do that by sharing my PH story and yours.

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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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