Genes

[marta]

Well it's not just for my daughter, I don't think anything can come out of the research that quick. I do think however that if there is anyone who can make a difference for the future it's us. We've been thrown into the lion's den and we have the answers in our bodies - there's lots of smart doctors/scientists out there but without us, they can't really do the research. So hopefully the right combination of a smart researcher with the RIGHT question and study sample of willing WG's or GPA's can lead to the RIGHT answer and nobody's kids will have to deal with this (there's enough other crappy things to deal with besides Wegener's).

[NicShaf]

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.

Maria,
I asked this question when I was first diagnosed. My greatest fear was passing this disease onto the children I may have someday. I was told my multiple doctors that there is no sign that Wegs is genetic at all. My dad also has an AI disease, Myestinia Gravis, and they still told me that the two aren't related and I shouldn't worry about passing anything on to my children...as far as Wegs goes. My other quirks are just my kids unfortunate luck

[maria garcia]

Thank you everyone for your input. ost replies don't believe its gene related. After reading the replies I noticed most people had someone with an Auto Immune disorder. I never said it had to be the same disorder. To Leigh my intentions were never to blame my mother in Law. There is no blame here. I was just told this and it consides with my family. Thank you Marta for understanding my question.

[delorisdoe]

Thank you everyone for your input. ost replies don't believe its gene related. After reading the replies I noticed most people had someone with an Auto Immune disorder. I never said it had to be the same disorder. To Leigh my intentions were never to blame my mother in Law. There is no blame here. I was just told this and it consides with my family. Thank you Marta for understanding my question.

to maria,,,i never accused you of blaming your mother in law. MY own mother blamed herself. I think that that is a common feeling that a parent would have if a doctor told them that it was genetic. I know that if my daughter got a serious auto immune dissorder feelings of guilt-however unrealistic-would creap up in my head. Obviously you cant blame someone for passin on a gene.

Furthermore, I had no problem understanding your question. You should be careful about making someone afraid to answer your questions. It could be that some day I have an answer to one of your questions-I have had wegners for 10 years-and I may be the only one who has the answer and I may not want to answer you for fear of insulting you. As it is I will assume you did not mean to make me feel silly for answering you in the first place.

[drz]

Is the DNA study that several clinics are currently doing the same as the one mentioned above? Has anyone else participated in this? I am contacting the Mayo clinic to schedule an appointment to be evaluated for the study. It seems like it is a one time deal and we have to pay for the interview time.

[marta]

Is the DNA study that several clinics are currently doing the same as the one mentioned above? Has anyone else participated in this? I am contacting the Mayo clinic to schedule an appointment to be evaluated for the study. It seems like it is a one time deal and we have to pay for the interview time.

Hey drz, doesn't sound the same to me. I just contacted them and they sent me the package and I just do my own swab smear, and get blood taken at the lab and then send them the results and the swab by Fedex - prepaid. It costs me nothing and you just fill out a form that they send out.

[Sangye]

Maria, when we've asked members here whether they have a family history of AI diseases or not, about 1/2 have an AI family and 1/2 don't.

[pberggren1]

I don't think I even understand it Marta. Or should I say Shnook. lol

[Chris G]

If you're taking a poll.........I have NO AI disorders in my family history. I'm the only lucky AI winner. But god forbid I should pass this on to one of my boys. I would feel SO guilty - and that's not me being a drama queen. I think we all would feel that way.

[mishb]

Same here Chris,
12 kids in my family and no AI's amongst them ....only lucky old me and I seem to have managed to get an entire fist full of AI's all rolled into one little package.
(That's me...little 4'11" package of AI's)

Others have some heart problems, which appears to be the normal between my brothers, sisters, parents and grand parents...but no AI's.
Sorry, it definately isn't in my genes.