statistics

[Sadrian]

I wonder sometimes, who and how the medical community keeps track of the statistics of Sjogren's and other illnesses.  It seems that quite a number of people on this site have sjogren's without having the positive bloodwork.  It also strikes me that there are people in this community of all ages. I am becoming doubtful about the accuracy of statistics.


My University doctor (who I thought would be very good, but am since finding out otherwise)  does not want to treat me unless I now have a positive lip biopsy (tomorrow is my big day.)  . My doctor is hung up on the statistics.  Yes...  statistically it would be unlikely that I have Sjogren's, my bloodwork does not point to Sjogren's and I am in my early 30s. 

Also, of note...  I have breast implants from 10 years ago.  I remember reading at the time that there was a controversy concerning implants and autoimmune illness.  Since then, the FDA has come out saying there was no evidence linking the two.  I know we may never know if the implants have anything to do with my statistically unlikely and extreme sicca symptoms, night sweats and other ailments, but I would love to make sure I count towards the statistics. 

Does anyone know how they track these things or how to make sure we become relevant in their numbers?

[kimbo]

Sadrian,

I have been thinking about stats or more specifically, the polls on our own forum. When I thought of the fact that this is a global forum and we actually hold our own personal stories that should be of value to DRs who really would like to investigate and further solve mysteries of SJS AI. There are so many of us here, that share many things in common and some not in common, we present a perfect study for are own DRs if they cared to learn more.

kimbo

[BonusMom]

Also, of note...  I have breast implants from 10 years ago.  I remember reading at the time that there was a controversy concerning implants and autoimmune illness.  Since then, the FDA has come out saying there was no evidence linking the two.  I know we may never know if the implants have anything to do with my statistically unlikely and extreme sicca symptoms, night sweats and other ailments, but I would love to make sure I count towards the statistics. 

I was talking with one of the attorneys that I work with and she worked on a class action case relative to breast implants.  She said that if someone tested positive for Lupus (in particular) after their implant surgery, more compensation was apparently offered to those plaintiffs. 

Although the FDA claims there is no link with AI disorders and breast implants, apparently there is evidence that there is a link.