Genes

[maria garcia]

Does anyone with Wegener's have a family member with an Auto Immune disorder? My daughters doctor told us that most of the time it has to to with are Genes. And my mother in Law died of an Auto Immune disorder.

[pberggren1]

I really don't think that Wegs is genetic in any way. I have lots of family with other auto immune diseases like MS, Diabetes, RA, Essential Tremmors, etc.

[delorisdoe]

Does anyone with Wegener's have a family member with an Auto Immune disorder? My daughters doctor told us that most of the time it has to to with are Genes. And my mother in Law died of an Auto Immune disorder.

I personaly believe this remains to be seen...and we may never know but what I do know is that there is no way in @#&% your daughters doctor knows if it has anything to do with Genes. Either you misunderstood him and he was just giving his opinion or he is blatenly wrong. It honestly does not matter either way. It does not change the outcome or treatment. Furthermore having ONE relative with an autoimmune disease does not qualify for "running in your family". My mothers side of the family is loaded with strange and uncommen auto immune disorders. My father was adopted so who knows there. like I said either way it is not that important.

[pberggren1]

Ditto to what Leigh just said.

[Sangye]

Maria, your daughter's doctor is uninformed. Dr Seo told me Wegs occurs in AI-families at the same rate as in non AI-families.

[marta]

I really don't think that Wegs is genetic in any way. I have lots of family with other auto immune diseases like MS, Diabetes, RA, Essential Tremmors, etc.

...I'm still trying to figure out what exactly this means....

There is a strong contingent of the medical profession who do believe that there is a genetic link, so much so in fact that there is a study being held at Mt. Sinai Hosipital called "Identification of the Genes Responsible for Wegener's Granulomatosis" led by Dr. Kathy Siminovitch. If you are interested in getting a little extra blood taken out of you on your next blood test and sending your results to the study, all you have to do is contact them at [email protected] and they will send you the package. It's a swab of your inside cheek and a blood test that the lab sends the results directly to them. Then they will see if we all have the same little mutant gene in all of us, and get a little bit closer to knowing what caused this - I know it wont help any of us now, but it might help our kid's kids (which is where the benefit lies and what makes it indeed important), and the endless back and forth between differenct doctor camps and conclusions based on unrelated stats can be put one step closer to rest.

I come from a family of AI problems... my dad has Lupus, my mom Fibromyalgia, my sister (only sister) has Psoriatic Arthritis, so I was primed and ready and just needed the right trigger, and poof - here I am a loud mouth schnook on a forum I would have never even known existed before.

[delorisdoe]

We could compete for the most auto immune in our families marta. When my brother was diagnosed with either devicks or ms-they are not sure what one he has-the doctors told him that auto immune does run in families. I find it difficult to believe that only certain doctors are right about everything. Only time will tell.

[delorisdoe]

Also, I actualy look at my daughter and often wonder what one she will end up with. I did not mean to be insensitive towards future generations. When the doctor told m brother that my always dramatic mother cried out "oh god I did this to them." I just thought of that when maria metioned her mother in law

[marta]

I didn't mean to say anyone is insensitive. Sorry if I came across that way. There's gotta be a drama queen in every family - I have a sneaky suspision however that none of the people on this forum are that drama queen in their families, but it sure makes life interesting when you have one around. Besides, if we're carrying said gene and pass it on, it's not really our fault is it? If the gene theory comes out to be true, then we are just victims of genetics like our parents were and like our kids and grandkids are. It's just luck of the draw. However if they find said gene, they might be able to find a way to suppress it's expression in some way and keep future generations from knowing this disease's name.

As far as certain doctors being right about everything - yeah, no way! I remember one session in university where we had a bunch of guest profs come in and speak about the peopling of the New World, and we had two world famous profs who were on opposite camps with their theories in the same room - sparks they were a flyin'. They both had a ton of data to support their argument and were both experts in the field and well respected in academia, but boy did they support two completely opposite theories. So who's right? In science it all depends how you ask the question, and then how you go about proving your hypothesis. Nothing's perfect, not even science.

[delorisdoe]

Ha ha, you implied nothing at all. My daughter has been gone for ten days. Aparently out of sight out of mind. The importance in determining if there is a genetic component is huge to any parent with any auto immune disease.