YC Bio

I'm not claiming to do better: my "give a motivational speech when I see you in clinic twice a year" approach certainly isn't worth shit.

But just because one approach is important does not mean others are snake oil. CF has a clear biological basis, and there are randomized, controlled trials proving that secretion management (e.g. DNase), glucose control, timely antibiotics and anti-inflammatory meds, and chest physiotherapy work. These trials also establish an average effect size (whereas your anecdote only tells me about you; I have also had patients who took similar measures but still died young). The average person with CF died at age 25 in 1986 -- today it's above 40.

Wouldn't it be nice if you could prove any nonsense proposition p simply by insisting that p "isn't PC" and therefore any attempt to prove p "won't get taken seriously anyway" so it very-well oh-so-likely must actually be true!

And of course, asking males to take time away from their careers is out of the question...

The current mental model is that people with CF overproduce mucus and are drowning in their own mucus. I believe this to be incorrect. We underproduce mucus. Giving the body what it needs to produce enough mucus makes a big difference. Inadequate mucus production is one of the ways the body's immune system is compromised and fixing that is entirely about proper nutrition.

I am well aware of the increase in life expectancy thanks to better drugs. I also used to take about 8 or 9 maintenance drugs and they made life not worth living. I was in constant excruciating pain for 3.5 years. No amount of pain medication really stopped it and my sleep quality was atrocious. I got better in part because I wanted to hurt less and I did not care if that accidentally killed me.

I had a life before my diagnosis. After my diagnosis, all I had was drugs staving off death. I frankly can't comprehend why more people with CF don't commit suicide. It's a horrible way to live.

All the drugs have a six page handout listing side effects. They trade short term gains for long term costs, take credit for the benefits and blame your genes for long term negative impacts.

I am not against drugs. I was thrilled to get a diagnosis and be able to ask for Zithromax up front. But there are things very, very wrong with our current approach. If anyone but a doctor did such terrible things to someone, they would be charged with a crime.

I think I was unwelcome on CF lists in part because people who had literally tortured themselves or their child balked at hearing that maybe you don't have to be tortured. I think accepting the torture and making their peace with it was a necessary psychological survival mechanism and they probably could not even name their objection to what I was saying.

I don't hate physicians either. I'm having a terrible, terrible day and speaking to these issues on HN is basically evidence that I have finally snapped. I don't like hurting other people. But trying to not hurt other people is essentially killing me. These are things I cannot discuss anywhere. It isn't socially acceptable. And that is part of the problem. Other people not only can't speak of it, many seem incapable of even thinking about it. It isn't acceptable for someone with CF to want a life. Just not dying yet is supposed to be all we aspire to and that's it. And I am incapable of swallowing that.

But it is also the case that the human immune system remembers various kinds of foreign agents that it has seen and is more effective fighting them off later (hence immunization as an idea), and there seems to be some evidence that excessive hygiene results in allergies, autoimmune diseases, etc. See for a start https://en.wikipedia.org/wiki/Hygiene_hypothesis

It is pretty unfortunate if parents can’t afford to keep their kids home for a week or two if they get seriously sick, though.