Did you know that November is Pulmonary Hypertension Awareness Month? Throughout November, PH Associations, patients, friends, family members and doctors will try to spread the word about pulmonary hypertension.
Pulmonary Hypertension Awareness Month is celebrated with the intention of raising funds and awareness about this disease. Advocacy efforts aim to educate more people about pulmonary hypertension, in hopes of teaching others about the disease and encouraging earlier diagnosis. It will also help raise awareness to issues pertaining to those affected by PH, such as the need to access to better and less invasive medications.
In an effort to celebrate Pulmonary Hypertension Awareness Month, I would like to share why awareness is important to me.
As someone living with pulmonary hypertension, I need awareness so more doctors are educated about my disease. I am sure many other patients can relate to how unnerving it can be going to the ER, knowing that none of the staff on hand have any idea what PH is, or how to help treat it.
I have seen doctors Google the disease right in front of me, which is not the most comforting feeling in the world. I also experienced trips to the ER several times before my official diagnosis. Because of the lack of knowledge about pulmonary hypertension among the medical community at large, I was only diagnosed once I needed oxygen 24/7 and was in severe heart failure. Unfortunately, this is not uncommon and many patients need to see several doctors, over the span of a several years, before finally receiving a proper diagnosis. The medical community needs to be more aware of pulmonary hypertension, so patients can have safer ER trips, and so more people can be diagnosed earlier.
More awareness needed
Better education among the general public is also significant. I live in Canada, where I do not have access to all of the 14 FDA-approved pulmonary hypertension treatments that are available in the United States. Canadians do not even have access to all of the medications available here because of their cost. Perhaps if those in charge of making important decisions about what treatments were available to PH patients understood the severity of the disease, they would be informed enough to make better choices about a PH treatment’s availability to patients.
Those whose lives are affected by PH depend on donations to advance pulmonary hypertension research. Donating money to research for pulmonary hypertension is so important because it helps us understand how the disease works, all the different reasons it develops, and what medications might successfully treat it. With this information, more effective medications targeting various pathways can become available. Newer medications offer a promise of fewer serious side effects, less invasive approaches, and better outcomes. Because of the severity of pulmonary hypertension, new and better medications that promise us a brighter future are not only important, but perhaps life-altering. As such, time is of the essence.
Pulmonary hypertension awareness is also important to me because I would like more people to understand what I have. Most people have a general understanding only of “hypertension.” Because of this, they often think pulmonary hypertension is the same as regular hypertension, which simply isn’t the case. Pulmonary hypertension can be life-threatening. It can lead to disability and, for some, dependence on oxygen. Unfortunately, I know some people who still claim that “I am not that sick,” based on assumptions, not facts.
Many reports state that pulmonary hypertension is worse than certain types of cancer because doctors cannot treat it. Yet, very few people know what PH is. November is mostly known for Movember, and of course, cancer is also a very devastating disease (whether or not you grow a moustache to raise awareness about it). Both diseases desperately need awareness and funds, but as a rare disease, pulmonary hypertension struggles to get the kind of awareness other diseases have because they affect a much larger population.
This is why I think Pulmonary Hypertension Awareness Month is so meaningful. The positive impact that awareness for a disease can have is endless, and it would help improve the lives of so many patients and their loved ones. As a rare disease community, we have to work harder to be heard, but our voices and lives matter.
Together we are strong.
Together we are loud.
Please check back to read my second column this week, offering tips on how to help raise awareness for Pulmonary Hypertension.
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 Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.