Orphan Drugs
Excellent article. I had no idea that Quincy was involved in this legislation being passed.<p>I would like to see more research into diet and lifestyle based approaches to dealing with &quot;orphan&quot; diseases. To my mind, that&#x27;s a possible path out of this trap. You have to eat anyway. Food chemistry can have substantial impact on the body, especially if you have some anomaly where the body processes certain molecules differently.<p>I manage my condition with diet and lifestyle. I get attacked and dismissed as a deluded nutter suffering Munchausen for trying to talk about that online. But I don&#x27;t know what the hell else to do.<p>The mods on HN have been really great about the situation. I&#x27;ve been thrown off of other forums or told that people violating forum rules to attack me are fine and I&#x27;m the problem and I just need to shut up. I try to not push it too much because I don&#x27;t want to end up locked up in an insane asylum and dead because of it, like Semmelweis.* Though, in my case, dying would most likely be due to being denied the control over my diet and physical environment that makes it possible for me to be drug free and relatively healthy rather than being beaten by the guards and ending up with sepsis.<p>You probably can&#x27;t make the kind of money from researching and promoting dietary and lifestyle approaches to such conditions that you can from orphan drugs. I don&#x27;t personally know how to monetize it at all. When I had affiliate links on my health blog for a particular brand of salt I got attacked for that and told I could not be trusted, I was merely trying to get rich off the suffering of sick people. Having a form of the condition myself hasn&#x27;t served to give me any credibility.<p>In the minds of most people, the real definition of CF is what my CF specialist once told me: &quot;People like you don&#x27;t get well.&quot; Since I&#x27;m getting well, clearly, I&#x27;m a liar who doesn&#x27;t really have CF.<p>I don&#x27;t know how to find a path forward. Maybe the answer is someday I say &quot;Fuck this noise&quot; and stop trying to share what I know and just focus on something that pays my damn bills. But, for now, that idea still rankles.<p>* <a href="https:&#x2F;&#x2F;en.m.wikipedia.org&#x2F;wiki&#x2F;Ignaz_Semmelweis" rel="nofollow">https:&#x2F;&#x2F;en.m.wikipedia.org&#x2F;wiki&#x2F;Ignaz_Semmelweis</a>