HELP HELP from my Weggie Ladies....

[Meode81]

My dear fabulous Weggie Ladies,

I need your help in calming my nerves. I went from being perfectly healthy to turning 31 and almost dying of an infection in lung = Weggies diagnosis. It has been a rough 10 months, but hey, I am alive

My question is about pregnancy. I almost 32. I know I am young but I am scared. Has anyone had a baby AFTER being diagnosed with the disease?? I am deeply worried / PARANOID about
A) the Wegener's getting out of control again in my body during pregnancy.........
B) genetically passing this WONDERFUL AUTO FREAKIN IMMUNE gift on to my child....

Please tell me if I am crazy.
~XOXO Megan

[Alysia]

Hi,
you can be calm. wg is not genetic, as far as I know, and not passing to the kids.
and there are a lot of women who were pregnant and brought healthy babies. check in the forum, you can find some stories. I think that there is also a group on fb about it.

[mishb]

Hi Megan,

I would think that it is more than normal to be scared of what is yet to come

Alysia is correct, WG is not genetic and you will not pass it on.

One of our members, Emily, has just had a baby boy at 32 weeks gestation. Her baby is doing very well and is now 5 or 6 weeks old.
Emily has never been in remission and unfortunately, is currently in a flare.

Another member, Gwen, has had three beautiful daughters since diagnosis.

......there are also a couple of ladies that are currently pregnant and some others that have had children without a problem.

I hope this helps put your mind at ease a little bit and stops the CRAZY thoughts

[marta]

Hey Megan,

I think one of the lessons I've gotten out of this whole gig is overcoming my fears. We can be fearful of so many things, but normally we go through life not thinking about getting hit by a bus, or getting a wierd disease, but once we've experienced it, it's hard not to think about it.

Wegener's is not genetic, but autoimmune disease is. That's one of the two things they know for sure about autoimmune disease (of which WG is one), the other thing they know is that you can have the genetic predisposition but may never get sick because the other element is a 'trigger'. They haven't figured out where that genetic information dwells, but they know it's there (shockingly to some, I have a theory on that one too - ha ha ha - I have lots of theories on this bad boy.) This is why I am such a strong mouthpiece on working on finding out the common thread for all autoimmune disease, because if we find it, then we'll cure not only WG but 140 others that currently have no cure. I also don't want my beautiful little girl to have to ever deal with this crap that I'm dealing with so the quicker we find an answer the better. So the yucky answer to one of your questions is actually a huge motivator for me to keep on trucking and working towards raising awareness and finding a cure.

A good thing however in your question is that autoimmune disease has some hormonal elements to it (this is why 75% of people with autoimmune are female - there is some theories that suggest that there is a gut bacteria that regulates testosterone production, and is almost completely absent in people with autoimmune disease.) Because of the hormone association, some people aquire an autoimmune after pregnancy and some people get rid of their disease for good after pregnancy. I personally know a lady in my town who had horrible Rheumatoid Arthritis... and was on the same horrible cocktail we are on, she then had a daughter, who is now in University, and has never taken a drug or experienced any part of her RA since the pregnancy. So there is hope.

It's like everything else in life - a bit of a crap shoot. But when you go in knowing all the variables, that prepares you to handle anything that comes your way with grace. And like the ladies above said, there has been a number of Weggies who've had healthy beautiful kids, who then in turn give you that will to fight anything and be the best mom ever.

[pberggren1]

We also want to hear this theory as well Marta.

[Debbie C]

Last time I went to my obgyn I had a blood test done and he said was testostorone was below 0 !!!

I have a special cream I need to put on every day to boost it up...that reminds me ..I need to start doing that again

[Alysia]

I think that my wg was smoldering for years before the acute onset, which was 5 years ago. I had terrible fatigue, nose and ears issues, rush on skin, coughing, joint pains. I though that it was some allergy and that the joints pain were the result of arthritis I had when I was 17 yo (maybe it was wg then ??).
anyway, when I was pregnant with my little child, who is now 8.5yo, and while I was breast-feeding him (for 14 months !) I had no symptoms and I was feeling very healthy. so I believe that pregnancy and breast-feeding might help with wg.

[marta]

Alysa, I think that you probably had arthritis but what many people don't know, myself included, and what I really want to get out there is that if you have one autoimmune disease then you're more susceptible to more. I had a few super minor ones that I completely ignored, but had I known this factoid, I probably wouldn't have gotten the shot I got that got me sick. The problem is that we learn this stuff after it hits us, we need to get the info out there so people can avoid getting hit with a big one that can at best wreck their quality of life in an epic way, at worst take that life away. That's why people who have simple things like eczema and psoriasis and little ones that don't do much on your lifestyle (relatively speaking - I don't want to minimize them) should be extra vigilant of possible triggers. They already have the genetic predisposition so the other element is the trigger.... I know so many people with stacks of AI diseases.

But they know so little, so the hormones of pregnancy can trigger or eliminate an autoimmune disease. It's a crapshoot,

Here's an interesting article regarding women and autoimmune disease from the site that altered my life: Autoimmune Disease in Women | AARDA

Many AI diseases if caught early are completely reversible and incurable if left too long. Unfortunately the medical profession is so oblivious when it comes to AI that we are often completely blown off until it becomes a life long problem. This is why I keep beating my drum. We can change things.

Browse through this website and you'll be blown away by some of the stats and the info in there. It truly is shocking how far behind we are on this disease group from others. It's shameful.

[carriej22]

I'm 24 and also worried/worrying about the baby thing.

For me, it's not so much about passing it on (but that is part of it) it's more about the stamina and strength to raise a child, and/or possible future flares and not being able to be there for possible little humans who would need their mama.

[Alysia]

Alysa, I think that you probably had arthritis but what many people don't know, myself included, and what I really want to get out there is that if you have one autoimmune disease then you're more susceptible to more. I had a few super minor ones that I completely ignored, but had I known this factoid, I probably wouldn't have gotten the shot I got that got me sick. The problem is that we learn this stuff after it hits us, we need to get the info out there so people can avoid getting hit with a big one that can at best wreck their quality of life in an epic way, at worst take that life away. That's why people who have simple things like eczema and psoriasis and little ones that don't do much on your lifestyle (relatively speaking - I don't want to minimize them) should be extra vigilant of possible triggers. They already have the genetic predisposition so the other element is the trigger.... I know so many people with stacks of AI diseases.

But they know so little, so the hormones of pregnancy can trigger or eliminate an autoimmune disease. It's a crapshoot,

Here's an interesting article regarding women and autoimmune disease from the site that altered my life: Autoimmune Disease in Women | AARDA

Many AI diseases if caught early are completely reversible and incurable if left too long. Unfortunately the medical profession is so oblivious when it comes to AI that we are often completely blown off until it becomes a life long problem. This is why I keep beating my drum. We can change things.

Browse through this website and you'll be blown away by some of the stats and the info in there. It truly is shocking how far behind we are on this disease group from others. It's shameful.

thanks, marta, for yours' explanations and for the link it is very impressing.
treating correctly from the beginning can prevent a lot of damage and bring to remission.
I was not lucky enough to have docs who knows what they are treating
a lot of mistakes were done with me.
In fact, only since I came here, I am starting to understand more about wg and what should be done, and I can see the mistakes my docs did with me, and also can insist now on better treatment.
this is one of the reasons that I am so grateful to the amazing people here