30 Days of PH: Advocacy

30 Days of PH: Advocacy
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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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Jen Cueva is a “ well -seasoned” patient who has been living with pulmonary hypertension (PH) since 2005. Although her favorite place is Southern California, she now lives on the Texas Gulf Coast. She lives with her supportive and comical husband and their Mini Schnauzer named Sasha. Prior to acquiring pulmonary hypertension (PH), she worked in nursing, which she wholeheartedly loved. She enjoys cooking for her family, listening to live music, and sitting by the water. You can also find her visiting local coffee shops with her daughter(as she writes or chills) or at a medley of restaurants. She’s a total foodie! In her weekly column, ”Worth the PHIght ”, she delves into the rollercoaster of emotions that she faces living with PH. She hopes to share her challenges and tips while touching on current topics with other PH patients and their caregivers. Her goal is that by sharing her PH journey, she will inspire and instill hope in others. Together, eventually, we will find a cure for pulmonary hypertension- Never give up hope.
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Jen Cueva is a “ well -seasoned” patient who has been living with pulmonary hypertension (PH) since 2005. Although her favorite place is Southern California, she now lives on the Texas Gulf Coast. She lives with her supportive and comical husband and their Mini Schnauzer named Sasha. Prior to acquiring pulmonary hypertension (PH), she worked in nursing, which she wholeheartedly loved. She enjoys cooking for her family, listening to live music, and sitting by the water. You can also find her visiting local coffee shops with her daughter(as she writes or chills) or at a medley of restaurants. She’s a total foodie! In her weekly column, ”Worth the PHIght ”, she delves into the rollercoaster of emotions that she faces living with PH. She hopes to share her challenges and tips while touching on current topics with other PH patients and their caregivers. Her goal is that by sharing her PH journey, she will inspire and instill hope in others. Together, eventually, we will find a cure for pulmonary hypertension- Never give up hope.
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