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....:unsure:

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:huh:

[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.:wink1:

[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.

[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.

[Sangye]

Same here. No AI diseases on either side of my family.

[DEE]

My daughter was diagnoised with Crohns six months after I was dxt with WG . At one time we were on almost the same drugs !! .

[marta]

Another reason to hope that WG has a genetic component.... if it does, maybe one day they can do some creative genetic slight of hand on us....

Gene Therapy May Help Muscular Dystrophy Patients (http://www.webmd.com/parenting/news/20110725/gene-therapy-may-help-muscular-dystrophy-patients)

[RCOSSIO]

Maria this is a topic that had been brought to this forum several times...and I do agree that 1/2 have AI and the other half no AI. As for my case my uncle had WG and we think my grandfather, his father has WG as well.

Its a Caribbean thing...brought it over from the island 90 miles away!

[Sangye]

Maybe Wegs came here via a Cuban bunny rabbit? :laugh::blink:

[RCOSSIO]

Hahaha..on a raft :w00t:

[Chris G]

We spent several days in the hospital last week with my 11 year old son, who has been diagnosed with type 1 diabetes (an AI disease). It's been the longest, most difficult week of my life. The doctors all repeated that we did nothing to cause it, and could have done nothing to prevent it. I of course sat there wondering whether I HAD actually caused it. But I couldn't bring myself to ask the question without crying. I've finally gotten hold of my emotions, and so I'm gonna pose the question to all of you.

We have no other type 1 diabetics in the family that I'm aware of. I don't have it myself. Since my WG diagnosis, I've always feared that I could pass something on to my boys. And now I'm afraid that I have.

[Sangye]

Oh Chris, I'm so sorry. That's a difficult diagnosis for a child to get. :sad:

There is NO way you passed that on to your son. If the tendency toward AI diseases were genetic every family on earth would be filled with them. I think you're going through what every parent naturally goes through when a child gets dx'ed with something serious--wondering if it was something you did or genes, etc.... Hugs to you, dear. :hug2:

[Chris G]

Thanks Sangye. I hope that you are right, but I'm not sure I'll ever fully believe that I didn't have anything to do with it.

While I was wallowing in guilt, I failed to mention how amazing he's doing. We were released from the hospital last Tuesday. Since Tuesday afternoon, he has been doing all of his own testing, and since Thursday, he's been doing all of his own shots too! We help him figure out the carb count, and then he does the insulin calculations himself too. Did I mention he's 11???? Yes I did. We're so proud of him.

So far his attitude has been pretty good, but he's already sick of all of this crap. Imagine being hungry and not being able to simply put food in your mouth without testing, counting, calculating, and giving a shot. It absolutely SUCKS. I wish I had a stronger word for it.

[Brooke]

So sorry to hear about your son having this. Hugs to all of you:)

[Sangye]

Chris, kudos to your son for doing so well!! Maybe ask his pediatrician to connect you with older kids who've had diabetes for awhile. (Or ask your own PCP for an adult patient). They might be able to give him tips and help him see that it won't continue to be such a major change. You'd have to give them your name and ask them to pass it on. I'm sure there are zillions of online support groups, too. But sometimes meeting someone in person has a bigger impact.

When I first went on coumadin they used the outdated guidelines of telling you to limit foods that are high in Vitamin K (most green stuff) and to eat exactly the same amounts every day. It was insanity. I was newly diagnosed and on high dose pred. Thankfully the new guidelines are for the patient to eat what they want and adjust the coumadin to them. Even so, I'm always aware of what I'm eating.

[elephant]

Im sorry to hear that, it will take a while for your son to adjust to his new diagnosis, along with checking his blood sugars and making sure he doesnt get low or high blood sugars. He will get there in time. You did not pass Diabetes to your son.