Hereditary or Not

[rkm001]

Some of you will probably remember me, its been a while, but I have occassionally been on reading the stories.
As you know my Mother passed away after only 3 months of diagnosis, but I do believe it was from mismanagement of her meds. Anyway, I have read that the disease is not hereditary, but that research is still not complete. Do any of you know where I can get more information about the possibility of being hereditary and if there are any studies that my brothers and I could participate in to help the research?

[elephant]

Sorry about your mom. That is wonderful that you want to be involved in trying to figure out this nasty disease. I would recommend the Vasculitis Foundation. I think there is a hereditary link, four of my siblings have autoimmune diseases. Then I think it gets triggered somehow ( infection,virus, vaccine,chemicals). I have always wanted to research this myself, maybe someday. Someone else might have a better answer.

[Sangye]

I remember you and think of your mom's story quite often. It's motivated me to speak more strongly to new members about the need for a Wegs specialist. Your mom's death has already saved other people. I hope that can be of some comfort to you.

I agree with Elephant that VF is the best source of info. You'll find a link to a genetic study underway at Mt Sinai which compares DNA of Weggies to their blood relatives. Because your mom has passed, I'm not sure if they can use your DNA, but please contact them to see. Take good care of yourself--

I don't think it's directly genetic, since no one in my family has an AI disease or anything like it. I'm thrilled that they're doing the research, though. I'm sure something of use will be discovered.

[rkm001]

That is one thing I love about this site, the quick responses. I truly appreciate the information. I am really going to try and attend the 2010 VF Conference. We were able to see the Wegs specialist that actully started the VF. Unfortunately, it was too late for Mom.

[Luce]

My sister has alopecia and my mum has Raynaud's phenomenon, both of which are auto-immune conditions. It does make wonder if certain genetics can lead to problems with the immune system and would love to read any research on this.

[andrew]

I believe there's a hereditary link there somewhere. My Dad and my Sister both have auto-immune issues. I'm almost positive it's not the entore story though and that a mixture of conditions including heredity causes this. Just my personal opinion based on...um...er.....

[Sangye]

Love the new avatar, Andrew! I'm heading right over...

[elephant]

Yep, I went to the dark side and it was good.

[Sangye]

We had a nice dinner at our temple tonight. I went to the dark side way too much.

[onatreetop]

The darside is made of cookies isnt It! I had a sample tonight and want to move to the darkside forever!!! But darthvader isnt my father.Grandpa no-neck is!!!!!!!!!!!!!!!!!!!!!!! Love him too! RussianTea Cakes and Chocochip cookies all the way!!!!!!!!!