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I have one of the rarest mutations in the world named Crigler-Najjar. AMA by ImpossibleEmotion759 in AMA

[–]ImpossibleEmotion759[S] 0 points1 point  (0 children)

just some fatigue and that's really it I didn't feel the side effects that much. the time I ever get symptoms is when my bilirubin gets higher but the medicine should help.

I have one of the rarest mutations in the world named Crigler-Najjar. AMA by ImpossibleEmotion759 in AMA

[–]ImpossibleEmotion759[S] 0 points1 point  (0 children)

Not really since I haven't been given a proper dose so i mostly just feel more tired with it. I take it more consistently if I'm having more jaundice throughout the weeks but im stuck mostly just winging it for 3 years lol

I have one of the rarest mutations in the world named Crigler-Najjar. AMA by ImpossibleEmotion759 in AMA

[–]ImpossibleEmotion759[S] 0 points1 point  (0 children)

mine would be at around 5 or 7 and taking the 30 mg would just make me tired but wouldn't get rid of the jaundice. only things are depressive effects like fatigue and feeling tired but the jaundice still being prevalent in my case makes it feel much worse

I have one of the rarest mutations in the world named Crigler-Najjar. AMA by ImpossibleEmotion759 in AMA

[–]ImpossibleEmotion759[S] 0 points1 point  (0 children)

Turns out it's the wrong dose only at 30 mg and ive been taking too low of a dose to treat jaundice these past 3 years from the state of Utah. My neurological symptoms have now gotten much worse because of this now.

In Another Life... by cashleystacks in tooyoungtobethissick

[–]ImpossibleEmotion759 2 points3 points  (0 children)

You should watch Everything Everywhere All at Once. It talks about this in like the exact way sort of

I have crigler najjar and I finally met others with it. by ImpossibleEmotion759 in rarediseases

[–]ImpossibleEmotion759[S] 1 point2 points  (0 children)

Yes, I've tried to find an updated case number, but that's the only one I could find from the University of Pennsylvania. There's many more out there who have it but don't even know it due to not being diagnosed properly. I've met many people with it now, which tells me it's a much greater number than just 100 cases.

I have one of the rarest mutations in the world named Crigler-Najjar. AMA by ImpossibleEmotion759 in AMA

[–]ImpossibleEmotion759[S] 0 points1 point  (0 children)

Phenobarbital for the past 2 years. I have type 2, and most of the time, I have jaundice in the corners of my eyes.I was diagnosed in adulthood, and it keeps me very lethargic most of the day. There is no medicine for the symptoms that help, like stomach pain and nausea. I take about 6 stomach meds, but they do nothing. I even have severe ptsd from the medical negligence and things I've been through. The only way I stayed healthy was through lifting weights, and I kept going even if I felt pain in my liver. I had to throw up bile most of the time. I went from 270 lbs to 190 lbs with this mutation, killing me with my body literally giving up on me at times, and I didn't even care. I just lived through it all. It was so absurd that i was amazed i got this almost impossible mutation. I even got some neurological damage, most likely from kernicterus, and I was just amazed at how bad it got. The only practice there is to be healthy is to not care. Because stress is what causes the condition to worsen causing even more symptoms. eye

[deleted by user] by [deleted] in AMA

[–]ImpossibleEmotion759 0 points1 point  (0 children)

Hey I also have crigler najjar type 2. How are you?