Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
I read that PE's kill more than Breast Cancer and Aids combined. I used to read a lot of medicine ,but I read little about PE. I watched my cholesterol , fats, sugar, lipids and blood pressure. I exercised my whole life. I did get obese though. I never thought about PE. Although a 67 yr doctor of mine died from it.
There are walks for breast cancer and pink ribbons. Walks for Hiv. and ribbons as well. So why no awareness for PE?
One possible reason is that PE is often secondary to other diseases, linked to long bed-rest. Like cancer, surgery,broken bones, heart disease. Deaths often happen in hospitals, so there is an incentive for the hospital to keep it quiet, for it's reputation.
Now that I have a PE, I want to bring awareness to the disease, so much of the time it cold be prevented with knowledge.
There are walks for breast cancer and pink ribbons. Walks for Hiv. and ribbons as well. So why no awareness for PE?
One possible reason is that PE is often secondary to other diseases, linked to long bed-rest. Like cancer, surgery,broken bones, heart disease. Deaths often happen in hospitals, so there is an incentive for the hospital to keep it quiet, for it's reputation.
Now that I have a PE, I want to bring awareness to the disease, so much of the time it cold be prevented with knowledge.
I think there are varying other reasons why this doesn't get the same support as other things. I do think that partly it's as you said, it often comes secondary to something else, so often people who have experienced it just consider it a piece of whatever other illness or injury they had. I initially considered mine an unusual complication of childbirth, so even in the early time I was thinking about how there needs to be more literature out there warning women who are pregnant or who take BC about the signs and symptoms, rather than just saying 'blood clots can happen' because basically no one really knows what that means. My family is riddled with a history of blood clots, and I still didn't have a clear idea of how to identify having one, and I still considered it a kind of flukey thing that would never happen to me. So my desire was to increase awareness within the realm of how I had experienced it.
I think in a way the raising awareness issue can be complicated because this is literally something can affect anyone at pretty much any part of their life, so it's not as if you can focus on one particular population, because while there are groups which are at increased risk, it's still an uncommon event within that entire population (except maybe cancer patients). Then, the population where PE probably is most common is the elderly, so I think families tend to not get all up in arms about deaths even from it.
Not saying any of this to discourage your feelings on this, and if you're really interested in working toward more education, you might look into the efforts and awareness campaigns that the National Blood Clot Alliance has in place and work with that. I know that another thing which I've felt for a long time is that the awareness and education within the medical community is the most important piece of the puzzle for prevention. I think doctors should be more prepared to consider DVT and PE a possibility, rather than just doing their normal process of elimation - like saying pain is a muscle strain, or SOB is allergies - I think they should listen better to people who go in and say they have something unusual going on and believe that people know their own bodies well enough to know when something is wrong. I complained of symptoms for a month before I finally got severe PE - so I was seeking care and suspected DVT for all this time, while doctors continued to tell me I was fine, and probably had a muscle strain - which was ridiculous in my circumstances.
So it's a multi-faceted dilemma.
It's really hard to explain that a PE is life threatening when only a day after being hospitalized I'm trying to convince people that my life is not in danger.