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rkm001
12-24-2009, 10:21 PM
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
12-24-2009, 11:47 PM
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
12-25-2009, 02:34 AM
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
12-25-2009, 03:37 AM
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
12-25-2009, 05:41 AM
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
12-25-2009, 08:22 AM
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
12-25-2009, 02:04 PM
Love the new avatar, Andrew! I'm heading right over...:D

elephant
12-25-2009, 02:10 PM
Yep, I went to the dark side and it was good. :p:D

Sangye
12-25-2009, 03:23 PM
We had a nice dinner at our temple tonight. I went to the dark side way too much.

onatreetop
12-25-2009, 08:55 PM
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:D!!!!!!!!!

andrew
12-25-2009, 10:35 PM
*cough* Back on topic please *cough*

;);)

Sangye
12-26-2009, 02:00 AM
(Hahaha, very skillful course correction, Cap'n!)

elephant
12-26-2009, 02:59 AM
:DAndrew It must be hereditary gene that makes us want to go to the dark side and eat cookies? Cough. opps, cough, hee, hee , couldn't help myself. :eek:

katwoman
12-27-2009, 11:52 AM
hehehe we so get easily distracted from the topic raised, especially if somewhere along the line there is even an inkling of food mentioned.

On topic, as far as I am aware there is no auto-immune disease of any kind in my family line....I had to be different :-)

jola57
12-27-2009, 09:13 PM
in my family before me my mother's second generation female cousin has rheumatoid arthritis and my male 1st cousin's daughter (dad's side) has rheumatoid arthritis. she is 27 now and it started when she was 18. so I don't know how that would be related.

elephant
12-27-2009, 11:21 PM
Jolanta, my sister has RA too and that is a autoimmune disease. It's interesting that some people in the forum don't have family with autoimmune diseases. It will take a good researcher to figure this one out.

Jack
12-28-2009, 02:58 AM
No sign of it in my family. They all stayed fit and healthy into old age.

coffeelover
12-28-2009, 06:39 AM
I certainly hope the current facts are true and that this disease is not hereditary. I donot want my children to suffer with it. My middle child has picked up my other "hereditary symtoms" like allergies etc...so I worry. Put my mind at ease please.

Sangye
12-28-2009, 06:43 AM
Allergies aren't hereditary. They only appear to be because dietary habits are mimicked by family members. Nutritional deficiencies can be inherited, however. This has been clearly demonstrated by early nutrition pioneers like Weston Price and Harry Pottenger. You can google for more info on their work.

Allergies can be totally eliminated with holistic treatments-- all aimed at regulating the immune system, not suppressing it as medical allergy treatment does. Acupuncture, Chiropractic, Naturopathy, Homeopathy, etc... all work very well. The sooner the better. The longer immune dysregulation persists, the more likely one is to develop other immune-related problems.

Doug
12-30-2009, 02:14 PM
Both my parents have/had rheumatoid arthritis, as did some or all of my grandpaprents (I don't recall). I'm the only weggie though. I bet an environemental trigger to a genetic component of weggies' makeup will be what researchers finally pin WG on.

Sangye
12-30-2009, 02:42 PM
Love the new avatar, Doug! Cracks me up looking at it...

elephant
12-30-2009, 03:48 PM
Off the subject , but too funny Doug. You must of finally finished the cookie.

moyan
12-31-2009, 08:30 AM
In our family, including all relatives, we have never had an autoimmune disease. I feel special :)

Doug
12-31-2009, 08:55 AM
You are special, moyan, and that's why we nags keep up the "get yourself a weggie specialist, and put the quack you're seeing now out to pasture" rant! Weggies deserve the best weggie specialists of all specialties for their care. Anything less can result in half-way attempts to learn how to control WG by doctors who sincerely are seriously wrong but hope to learn at your expense.

Rant! Rant! Rant! Nag! Nag! Nag! I tell you, my new avatar has a very bad effect on on me!

p.s. Glad you see the humor of it, Sangye! And yes, elephant, I had a serious consultation with the cookies, and ate them all, no questions asked!

Sangye
12-31-2009, 10:27 AM
Alert: Doug's new avatar has taken over his mind! I can see it on CNN Headlines now...

Doug
12-31-2009, 11:08 AM
Big Nag's nagging you! Yeah, you in front of the finger! Don't try to dodge it, it will follow you to the end of earth!

Sangye
12-31-2009, 02:14 PM
Okay, Big Pointy Finger, I'm taking this thread back to the topic...

I have a question for those of you who have family members with autoimmune diseases: How old were they at onset?

Jack
12-31-2009, 07:53 PM
No history in my family, but I was 30.

elephant
12-31-2009, 11:38 PM
Sangye my sister was 5 years old when she started showing symptoms of rheumatoid arthritis. I was around 10 years old, symptoms were red eye, joint pain, resp bronchitis ( on/off). At age 12 the rheumy diagnosed me with rheumatoid arthritis and put me on aspirin! My other sister showed signs of Nodosa ( Pans) at age 30, but was only on high dose of Prednisone and weaned down. She is in remission, healthy as a horse. My other sister developed Graves disease in her early 20's. I'm starting to wonder about my other sister who has constant sinus problems and last year had a ulcer like thing on the tip of her finger that comes and goes. I keep harping on here to go to the allergist ( she has never been tested) and she won't. I am keeping a close eye on her. My parents and grandparents have no autoimmune disease's that I know of. Good question Sangye.

Luce
12-31-2009, 11:41 PM
My sister was only 15 or so when she developed the alopecia, which started not long after a ladder struck her on the head and the initial patch of scalp that was affected was very close to the site of the trauma so we're guessing that was the trigger.

My mum's raynaud's started when she was diagnosed with an underactive thyroid so I'm not really sure how it came about and if raynaud's is always connected to the immune system. She has also suffered with asthma most of her life and my brother and myself both suffered with childhood asthma.

My Nan had rheumatoid arthritis but this came about naturally as she got older, my WG came about at the age of 25.

I'm still not sure the answer to WG is connected to genes, I was told the reason I have wegs is that I am genetically predisposed to the condition and the throat infection I initially contracted triggered the wegs off.

Terri2
01-01-2010, 03:12 AM
My aunt on my mothers’ side had Wegener's, my cousin has Temporal Arteritis, many others with arthritis, supposedly osteo, but with nodules for me, so I think that would be rheumatoid...but, hey...what do I know.
Many of my weird symptoms (I am undiagnosed but seeing many doctors) began about 8 or 9 months after I quit smoking and started exercising regularly. My theory was that my immune system had gone crazy because I was now so healthy and having quit smoking, it had nothing better to do then attack healthy cells. Any body else smoke, quit and then develop problems? Off topic...sorry :)

deb
01-01-2010, 04:27 PM
As far as I know no one on my maternal side has ever had any auto-immune diseases. However, I have no records from my birth father's family. I was 55 when diagnosed. I am also very interested in this question for my grandkids sake.

RCOSSIO
01-09-2010, 03:08 AM
All I can say is that my uncle had Wegener's diagnosed in 1992 and my grandfather "his father" passed away of a kidney aliment in 1968...possibly WG's

coffeelover
01-11-2010, 01:15 PM
My grandma and two of my aunts on my Dad's side have symptoms that correspond with my symptoms of Wegs...My grandma just dealt with it and lived into her 90's.
coffeelover

Jack
01-11-2010, 04:54 PM
In that case it was unlikely to be Wegener's which is pretty well 100% fatal within a short period if untreated.

Doug
01-12-2010, 06:37 AM
My aunt on my mothers’ side had Wegener's, my cousin has Temporal Arteritis, many others with arthritis, supposedly osteo, but with nodules for me, so I think that would be rheumatoid...but, hey...what do I know.
Many of my weird symptoms (I am undiagnosed but seeing many doctors) began about 8 or 9 months after I quit smoking and started exercising regularly. My theory was that my immune system had gone crazy because I was now so healthy and having quit smoking, it had nothing better to do then attack healthy cells. Any body else smoke, quit and then develop problems? Off topic...sorry :)

A little over fours years after I quit smoking, Terri2, I developed WG. It was the first time, other than when I was born and an industrial accident, that I wans in the hospital.