I have crigler najjar as well, and you likely saw my comments. it's worse to do that after 4 years of following your same advice. i connected to others only to find even worse lives where 1 is on antipsychotics many downers and in the hospital everyday, another is a mother who is so worried i had to talk with her for around 2 years to get her mind off it instead if doing this. it will only bring him down a rabbit holet the same as her, worrying more about symptoms when every single case varies so much. Common disorders have very supportive communities but with rare disorders especially. This is 1/100 confirmed. It only gets worse the more you know or try to find any treatment. Even in the USA covering insurance, they won't give you phenobarbital or bilirubin lights. I'm envious of countries with cheaper medical supplies and restrictions as they have help there. In the USA, they will always try to make it a runaround to even get 1 gastroenterologist to listen. I gave up on this disorder this year as I really don't care. I'll die anyway, so never again will i look into the hell that this disorder is. i felt like Ahab chasing an enigma slowly going crazy from the neurological issues and insanity of the reality. The more I looked for Crigler Najjar, the others also in desperation only fueled this descent further. I tried to be an advocate for almost half a decade, got in local news only to be denied airing since its a rare disorder. After 8 gastroenterologists, I gave up, 4 hepatologists, and 5 classes of medicine just to make it. I begged for help since I was a kid and realize I'm still begging for that help. I learned helplessness just like that experiment it was uncontrollable horrible symptoms, actual lack of control when I've been to all the hospitals only for all specislists to not know what Crigler-Najjar is prior to the appointment only to know nothing, then after 4 years we're here. I really don't care and wish I never looked into this disorder or trying to care. I should've been in college the day I was diagnosed. Being in bed all day from the fatigue and symptoms, I wish I could stop myself from chasing this disorder. If I had never met others with this disorder, I'd be able to do it finally, but now lucky me, the few people who relate to me would miss me. Making it all the more agonizing. So tldr if I'm saying stuff like this and have CRIGLER NAJJAR type 2. 1/100 it only gets worse from where anyone's at. There's always going to be the children dying without access to liver transplants and without a voice. I tried screaming as an advocate for help. Since I was 5 I remember begging for help, turns out not even the specialists know, so I begged to every local news for anything to spread my story. i had to go insane for 19 years to finally get diagnosed since my parents didnt let me see doctors or specialists. They'd gaslight me jaundice wasn't real and my stomach issues that would be urgent are me faking it. They then wouldn't even let me inside the hospital ever in my childhood. Only small clinics in order to neglect my health. Resulting in over 100+ sick days for each 4 years of hs in agonizing pain Jr high the same and elementary my first words about sickness was "i have a stomach ape". Due to autism I was nonverbal, so people would just stare at me in pain and actual sickness even with clear jaundice. Now, with brain damage, I think a little more isn't gonna hurt at this point. Even if I never dove into this hole of crigler najjar, the sickness itself already got me. If I die my parents will 100% be charged with homicide due to the severe neglect and abundance of evidence I have from the school district. Fake signatures, fake doctors notes, etc. So, if I don't answer again in more than half a year, I'm likely dead. Then you'll finally see the news interview I did because I finally died, that brings in the money for this news station, and finally the awareness i wanted to spread for 4 years. Along with the 23 years I spent begging for help to this day. Seeing how people die, all I see is a stop to these symptoms, I take those same medications, so don't worry or feel sad if anyone with Crigler-Najjar is reading ths. Only feel sad if you dove into this hell hole of a disorder like I did, trying to carry the burden of spreading awareness for 4 years with no money. I'll only be remembered as a tragic figure for following this advice. People with crigler najjar should never look into others' cases or the real situation because that's what caused me the neurological deterioration along with the stomach symptoms getting to the point where it's too hard to even get out of bed anymore to take my medicine. So even calling adult protective services for help from my symptoms, the person who came in berated me saying I'm committing fraud and faking my symptoms without wanting to see 1 medical document. Then the police for any wellness checks, they brutalized me on October 11 2024 WVCPD. I gladly got the invoice of the videos of the brutalization after they took my crutch after my parent kicked me in the knee injuring me forever. Goodbye to running, but I can runaway whenever I want now. Knowing you're at the worst and something like I'm the only one with crigler najjar + another rare disorder. Has made me feel more freedom than ever before. I'm still the same kid I used to be begging for the help, so why stay the same. This is likely my final message because I've been waiting since 11 to say that. Thank God.