I have a suspicion that I would like to share with you and have your opinion on that, it might be considered as a non-scientific, mini anecdotal research:
To the younger PSCers, especially teenagers, have you noticed that your diagnosis was few months to a couple of years after your use of orthodontics devices?
My son was diagnosed after 18 months into his orthodontic installations, I am still suspicious that there might had been something in those wires and parts that triggered his PSC…
As they say, getting a rare disease is like hitting a wrong jackpot, I do not say those devices were the cause but might be one of the elements that among others lead to his condition. If many people have the same experience, we might have something to look at here.
Many thanks in advance for your participation and comments.
I had braces for 5 years from age 9-14. I was diagnosed with PSC at 36.
… just wanted to contribute to this post!!
That’s interesting, but I’m not sure there’s any correlation. I’d ask his hepatologist what he thinks. I had braces when I was 8 or 9 years old for 4 years and was diagnosed with PSC at age 47. I’m really doubtful of your theory, but it’s good to look at every angle so ask his doctor what he thinks. Thanks for your post though!
I have asked this question to many doctors including hepatologists, GI, allergy and immunology specialist and others, nobody got a clue. But my suspicions came from the number of teenagers who were diagnosed and how common is to have braces these days, I know a thing or two about manufacturing of materials and I know there are many things that can go wrong during production of those wires and parts and glues etc.
I actually post this after a conversation with one of GI doctors that we are dealing with, she encouraged me to do this"research" to see if there is an evidence there.
I am not a medical professional but I am also about to be convinced that PSC is not a single diseases, those inflammation in bile ducts can have several causes (bacterial reactions, heavy metals, viruse infection etc.), like fever that can have several causes, and the diseases is different in youth than in older adults.
Anyway, I have posted the same thing in our Facebook group and gathering the data now, I will post the results in a couple of days.
Thank you for participating.
I had braces for about 6 years in my teens and was recently diagnosed at the age of 32. Interesting theory…
To leave no stone un-turned, I’ve submitted your question on this topic to one of my hepatologists at Duke Medical Center in Durham NC. When I get a response I’ll post it here.
I don’t know… all 4 of us kids had braces and I was diagnosed preliminary Stage 1 at 51. I had braces from 5th - 8th grade. The full wrap around the tooth metal mouth braces… not the stick ons. I’ll have to see if my cousin on my father’s side who died from PSC complications wore braces when younger - she was so much younger I don’t recall if she wore them.
I’ve also had tons of dental work - crowns, root canals, chipped teeth, tooth roots dying - but I blame that on pure crappy genes - that only I got.
Blonde and Blue Eyed is not genetically the best!
Thank you very much Mark.
I had fixed braces when I was 15 or 16. Diagnosis at 42.
Interesting, my husband was diagnosed at 38 & never had braces but has had fillings from his teens on. If there is some correlation to orthodontics - I wonder if there’s a certain metal compound, glue, rinse, et cetera that could be also related to filling materials/visits to the dentist in general?
My son, he’s 19 now, was diagnosed at age 17. He has never had any braces of any kind. He sees a Pediatric liver doctor at Vanderbilt children’s Hospital (Nashville, Tennessee) and she said that it’s pretty much random & very bad luck to be diagnosed w/ PSC. (At this point he has not been diagnosed with UC or any of the other GI problems that tend to go hand in hand with PSC.)
My son was diagnosed with psc at age 16 years .He worn braces for about 3 years from age 10-13 years of age .
Just helping with your survey.
Diagnosed at 48yr never had braces. But had colitis (thus leaky gut)
My son was diagnosed at 8 years old, never had any orthodontic work other than a couple fillings.
If you are correct, you’d expect no PSC cases in poor countries since people there won’t have money for braces.
One the other hand, typical intrahepatic bile duct change in PSC patients needs time to develop. I doubt 18 months are long enough.
Just my 2 cents.
My boy was diagnosed at 11 but has not had his braces yet.