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Comment by gfodor | Hacker News Reader

I have CF, and my whole life I avoided things like CF communities explicitly because I felt these ties to the disease would lead to a crisis in my life if it was ever something I could stop centering my life around.

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Chronic illness forums are almost universally terrible. I try to navigate the online communities for a family member’s disease to keep up with new developments. A decade ago I found some value in the way they presented news and research and anecdotes.

Now, the forums are overrun by small numbers of constantly online members who feel the need to dominate every conversation. The content has become almost entirely venting and memes, with an unreasonable amount of alternative medicine being pushed as fact. It’s understandable that they’re frustrated, to say the least, but the way their frustration gives way to a communal rage against doctors has weirdly opened doors to alternative medicine peddlers. It’s disgusting to me to see how the alternative medicine pushers have arrived with open arms and comforting smiles for vulnerable communities, which slowly becomes a sales pitch for their products.

I’ve seen everting from people peddling custom diet consulting based on your 23andMe results to invitations to private, paid Telegram channels where they supposedly share their secret cures, to doctors from Eastern Europe who claim to have cured the condition (which has eluded many researchers and pharmaceutical companies) with a custom treatment made from the patients’ own urine. The way these communities set themselves up to rage together at modern medicine opens the door for friendly alternative medicine scams.

It’s depressing.

IME one reason (out of many) why chronic illness forums tend to be terrible is that people who are managing their conditions reasonably well don't participate much. Which makes sense—the better you're doing, the less time you spend thinking about it and the less time you're inclined to spend discussing it—but that creates an environment where the most miserable voices become the loudest.

And so (1) there's often a disproportionate focus on doom and gloom rather than success stories, which paints a pessimistic picture for anyone joining after a recent diagnosis, and (2) the most prominent voices have a wounded-cornered-animal mentality that makes them defensive and/or prone to lashing out. And I can't totally blame them, given how hard it is to live with a treatment-resistant chronic condition, but it's not the most constructive environment for everyone else.

I'll echo this - I have had two left leg DVTs, spaced about 7 years apart, and after the second event, really started diving into medical publications - surgical journals, medical textbooks, clinical trials - as a means to better understand the condition, it's pathology, etc. I ultimately submitted to testing and discovered a congenital stenosis of the left iliac vein with heavy retroperitoneal collateralization that necessitated a stent to keep that iliac vein open.

I also had a quick look into the social media (primarily reddit) aspect of these vascular conditions, and it's a pile of dogshit. Most of these patient communities bill themselves as "support groups", but there's never any real discussion on meaningful research, drug, or device advancements. They places serve primarily as "pity pits" for chronic moaners and scammers selling alternative medicine.

This is interesting -- I have Factor V Leiden (heterozygous) and have had one DVT. It never would have occurred to me to seek out a support group.

I also have the same mutation, as does my wife. From what I've been told by various hematologists, vascular surgeons, and interventional radiologists, it's a very weak clotting disorder, but you do have to keep an eye on certain environmental factors: smoking, hydration, movement, and trauma/surgery. To put it another way, FVL is fairly benign until you're already way into Virchow's danger done, and at that point it's gonna work against you. When it comes to VTE in the presence of ONLY FVL, I would shoot serious side-eye at a doc that chalked it up to the mutation - there's usually something else going on.

Possibly true, but don't sleep on it -- I happened to be transitioning insurance when it happened, so I dragged it out for several days before ending up at the ER. They sent me home later that day, but with strict warnings about calling 911 immediately for any sign of stroke, heart attack or pulmonary embolism. Fortunately all I have to show for it is weakened vein flow in the affected leg.

I also have CF, and my diagnosis was different than most: I grew up dirt poor and wasn't diagnosed until I was almost 14. Even after diagnosis, it pretty much became incumbent on me to manage my care. I feel that not being put in a bubble and not being told I was going to die kept CF from shaping my perspective (today I'm 47 and have all the boring problems people my age have. My health is tolerable, sitting at about 50-60% lung capacity)

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