30 Days of PH: Advocacy

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by Jen Cueva |

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Day 5 of 30 Days of PH ⁣⠀ ⁣Topic: Advocacy ⁣⠀ ⁣This is Nicole’s story @schnauzergirl123⁣⠀ ⁣⠀ When I was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) in December 2013, I knew nothing about the disease. I quickly learned about PAH by reading as much as I could about it & by speaking with other patients through various facebook groups. ⁣⠀ ⁣⠀ Several months after my diagnosis, I had been verbally accosted in a grocery store parking lot by someone who thought, “I didn't fit the mold” of someone who should be parking in an accessible parking spot. I was deeply affected by this. I felt that I needed to write to my local editor to share my experience. I wanted everyone to know the importance of not judging a book by it’s cover. ⁣⠀ ⁣⠀ It was around this time that I became impassioned about educating the world on invisible illnesses specifically, PAH. I quickly became involved with the Pulmonary Hypertension Association of Canada as an official Ambassador. Ambassadors work on behalf of PHA Canada to provide leadership to the PH community. Ambassadors are champions of PHA Canada & seek to inspire others, advocate, and facilitate collective action in support of a better life for those affected by PH. ⁣⠀ ⁣⠀ During my time as an Ambassador, I advocated and educated for the disease via social media and in-person with various government officials. I also contacted our local news outlet and they offered to film a segment for Pulmonary Hypertension Awareness month. I find social media to be a very effective way to reach a wide audience. This allows me to advocate and educate frequently. ⁣⠀ ⁣⠀ ⁣When my Ambassador term came to an end, I joined the Board of Directors for PHA Canada so that I could continue to contribute to the PH community. While serving as a director, I've been advocating for drug access. As any patient knows, having access to all available, approved PH therapies are very important. Serving on the board of directors also allows me to use my voice to advocate for patients’ issues. I'm basically medically retired from my teaching job, being involved and advocating for PHA Canada gives me a sense of purpose and accomplishment. ⁣⠀ ⁣⠀ ⁣⠀ ⁣

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About the Author

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Jen Cueva Jen Cueva lives in San Diego, California, with her husband and daughter. Jen worked in nursing before the script changed upon her diagnosis of pulmonary hypertension (PH), group 1, in 2005. Advocacy has been essential to her life. Her passion is to instill hope and remind others in the PH community that they are not alone. To do this, she serves as a forum moderator for Pulmonary Hypertension News and in her weekly column she delves into the roller coaster of emotions that accompany PH. It is powerful and meaningful to her to have this opportunity to play a role in helping others become more informed and educated so they are more empowered in their journey. Together, we PHight stronger!

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30DaysofPH, advocacy, Canada

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