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I saw an old friend a few days ago and told him that I have Wegener's. He immediately said "My wife has that, a mild case but her sister has a severe case of it."
Could this be a hereditary link or not? I had assumed that the cause was unknown but probably environmental.
There’s a study underway at Mt Sinai in Toronto to assess the validity of the heredity hypothesis. Haven’t heard much about it for several years.Quote:
Originally Posted by John S
Autoimmune diseases run in my family. I’m the only one with Wegeners. My uncle has lupus, cousin has sarcoidosis, a bunch of rheumatoid arthritis and my sister has raynauds.
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I think GPA is like a lot of other diseases in that it is not inherited specifically,(at least no specific gene has yet been found) but many illness seem to have a tendency to be more prevalent in a family. Maybe there is a predisposition to have certain types of illnesses so physicians look at a family history to see what risks might be higher for a person. Things like auto immune disorders, heart attacks and strokes, cancers, diabetes etc and some others might be more likely for a person based upon their family history.
I have a few opinions on this one lol. Okay, so first, I believe WG is under-diagnosed. And it hasn't been publicized for decades. So when I combine those two facts it's not like my daughter's great-grandparents in the mid-West or back in the home countries would ever have thought to say Well, you know, Uncle Sven died of Granulomatosis with Polyangiitis! lol We simply cannot go back in our family trees on this topic. However, like most WG patients, our daughter has biologically-related family members (cousin, uncles, grandfather, 2nd cousins) with autoimmune disorders. Statistically, if a person has one autoimmune disease they are more likely to develop another (like, 40% more likely, if I remember right.) So, if with our limited knowledge, we can identify at least 7 people in the family trees who have been diagnosed with an autoimmune disease, then the odds are getting bigger that someone in the family may have had WGs. But besides all that, in our pediatric-onset WG group with I dunno, 65 or 70 families, at least one has a couple people with WG. Statistically that would be shocking if WG is as rare as they say and has no heriditary component. But if you read long enough thru the huge FB WG group, you start seeing a case here and there of people who are related both having it. Again, statistically, that just doesn't make sense without a genetic tilt.
I think they said in this one book which I read that it was more likely with close family members, like 500:1 odds. While I think otherwise the odds would be 50.000:1. So that would mean that although it would be far more likely to get it, its still a very rare occurrence.
Then again a professor did say that it wasn't hereditary, and I'm sure he knows a ton more about vasculites than I do. So maybe its like drz suggested, that it isn't hereditary but some families would be more predisposed to get it. I think that would make sense, as wegs is quite specific to some areas of the world, while there aren't almost any cases in other places.
Another piece of research about heredity and wegs...
https://www.the-rheumatologist.org/a...ed-vasculitis/
I suspect some of us are part of the N in the studies listed in the references. I know some of my past blood samples taken for various research studies were sent to Merkel in Philadelphia. Martha and some others on here often talked about trying to find the common thread for Autoimmune diseases and these genetic studies seem to be part of that quest.Quote:
Originally Posted by Pete
My blood and spit was sent to Mt Sinai, Cleveland, and New Zealand. Have no idea what happened beyond dropping it in the FedEx pouch.