30 Days of PH: Advocacy - Pulmonary Hypertension News

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30 Days of PH: Advocacy - Pulmonary Hypertension News Posted: 05 Nov 2019 10:00 AM PST View this post on Instagram 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. ⁣⠀ ⁣⠀ ⁣⠀ ⁣ A post shared by Pulmonary Hypertension News (@pulmonaryhypertensionnews) on Nov 5, 2019 at 8:48am PST Author Details × Latest Posts Average Rating 5 out of 5 stars. 1 votes.

Pulmonary Hypertension - the rare lung condition with no cure - ITV News Posted: 07 Nov 2019 05:51 AM PST A primary school teacher from Kent, who was diagnosed with a rare lung condition, was first told she may have asthma. Alex Charlesworth from Dartford is now trying to raise awareness of Pulmonary Hypertension. The disease restricts the flow of blood between the heart and lungs. Every morning Alex Charlesworth prepares her medication. She wears a pump 24 hours a day through which drugs are pumped into her body. Alex, a primary school teacher, was initially told she had asthma but was then diagnosed with Pulmonary Hypertension for which there is no cure. It's a rare disease that restricts the flow of blood between the heart and the lungs because arteries become stiff. SYMPTOMS OF PULMONARY HYPERTENSION Alex knows that she has a life long condition but having a diagnosis means she can now control the symptoms.

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