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kecaj
@kecaj

Posts: 3
Joined: Mar 24, 2016

Looking for any food links regarding Vasculitis - Wegeners disease

Posted by @kecaj, Mar 24, 2016

Hello – looking for any food links regarding Vasculitis – Wegners disease – it’s such a new diagnosis – and also very difficult to research – any ideas ?

REPLY

Hi
There are many but a good place to start would be http://www.vasculitisfoundation.org, probably the best site for reliable information. Then on Facebook you could join the groups- Vasculitis Awareness and Weggies Lounge just to mention a few, many people all over the world with wegeners that support each other.

If you have any specific questions, I have Microscopic PolyAngiitis which is a sister disease to Wegeners, very similar.
Kathi Snyder

@mkat5955

Hi
There are many but a good place to start would be http://www.vasculitisfoundation.org, probably the best site for reliable information. Then on Facebook you could join the groups- Vasculitis Awareness and Weggies Lounge just to mention a few, many people all over the world with wegeners that support each other.

If you have any specific questions, I have Microscopic PolyAngiitis which is a sister disease to Wegeners, very similar.
Kathi Snyder

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Hello
Thank you – we will look .
Jack

@mkat5955

Hi
There are many but a good place to start would be http://www.vasculitisfoundation.org, probably the best site for reliable information. Then on Facebook you could join the groups- Vasculitis Awareness and Weggies Lounge just to mention a few, many people all over the world with wegeners that support each other.

If you have any specific questions, I have Microscopic PolyAngiitis which is a sister disease to Wegeners, very similar.
Kathi Snyder

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My husband had Wegeners Granulomatosis. Horrible experience for him. Took 4 years to get him in remission . Only to end up with cancer and passing away. He went through so much

Hello – I’m so sorry about your husband – it has to b devastating to lose your spouse. My wife was diagnosed with it last October – after chemo she seems to b doing better but now she is on oral immunosuppressants and they make her feel sick and very fatigue – we are at the point that she is opting out from taking them. Not sure if that is the right thing to do but she simply can’t function on those drugs

@kecaj

Hello – I’m so sorry about your husband – it has to b devastating to lose your spouse. My wife was diagnosed with it last October – after chemo she seems to b doing better but now she is on oral immunosuppressants and they make her feel sick and very fatigue – we are at the point that she is opting out from taking them. Not sure if that is the right thing to do but she simply can’t function on those drugs

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It is a difficult decision to discontinue medications, however I understand. My first autoimmune was Sarcoid in 1977 after giving birth to my son 6 months earlier. At that time steroids were really the only treatmeant for the immune system and then trying to manage the organ problems such as breathing treatments for the lungs.
In 2007 my 20 yr old daughter was diagnosed with Crohns. That was the first time I started to find out information on the biologics and immunology suppressants.
After so many health problems from the medications taking her to death door, we decided the side effects of the medications were worse than the illnesses. She continued predisone slowly reducing from 300 mg to 20 to 30 mg a day. Even tho the prednsone has caused severe bone death in one foot and other bone and teeth problem the other health problems improved. She is up and down but the low blood count, liver function, cancer scares , abscesses and more are not there from the medications.
Again it is not an easy decision and I am not ADVISING anyone stop their medicine!
My daughter started researching alternatives and is now almost has her degree in Integrative and Natural Alternative Medicine and licences Health Coach.
She is involved with several organazitations and groups and if you are anyone is interested in her knowledge and research send me a personal msg and I will forward you the information.
I am not soliciting for business, She is an amazing resource and has learned because she had been living this with my Mom, her Mom and herself. Can it stop before my 3 Granddaughters reach 20????
Hugs

@kecaj

Hello – I’m so sorry about your husband – it has to b devastating to lose your spouse. My wife was diagnosed with it last October – after chemo she seems to b doing better but now she is on oral immunosuppressants and they make her feel sick and very fatigue – we are at the point that she is opting out from taking them. Not sure if that is the right thing to do but she simply can’t function on those drugs

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I don’t have Wegeners , my husband did in 2002 and he has passed in 2008 so I can’t answer your guestions, sorry

So hard to be the spouse or parent ,brother or sister etc to be the one
that tries to keep living after their death. My husband died in July of
2009 and my 37 year old Son in Nov 2009. Both were unexpected and no
suffering which is good. However I did not get to say I love you and always
will. I had always made sure that was the last words I said so I knew they
knew. My daughter being so sick from the immune systems keeps it on my mind
everyday it could be the last for either and love all that I can.
Hugs

@mswanda

So hard to be the spouse or parent ,brother or sister etc to be the one
that tries to keep living after their death. My husband died in July of
2009 and my 37 year old Son in Nov 2009. Both were unexpected and no
suffering which is good. However I did not get to say I love you and always
will. I had always made sure that was the last words I said so I knew they
knew. My daughter being so sick from the immune systems keeps it on my mind
everyday it could be the last for either and love all that I can.
Hugs

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I do know that stress plays a big part on your immune system because my husband go Wegeners the same year like 10 after my 13 year old son drown in the bathtub while taking a shower due to a seizure. They believe. I think he slipped and fell stepping out and in for a new bar of soap and hit his head hard enough to knock him inconcious face down. Most horrible day of our lives. I will never get over that

Hi Jack (@kecaj) ,

I understand what you must be going through. I was diagnosed with Rheumatoid Vasculitis, which turned out to be an even more rare form called Livedoid Vasculopathy. I have a great deal of contacts within the community, one of which I recommend speaking to time and time again.

I would connect with “Jim Bornac” – Vasculitis Advocate
https://www.facebook.com/bornac

His knowledge on Vasculitis never ceases to amaze me. I did a walk for Vasculitis a few years back with my son with Vasculitis Canada org, met some amazing people there. I sent him a message just now inviting him to join this discussion.

I hope you get the answers you’re looking for!

Good luck my friend.

Sincerely,
Martin

@mlemieux

Hi Jack (@kecaj) ,

I understand what you must be going through. I was diagnosed with Rheumatoid Vasculitis, which turned out to be an even more rare form called Livedoid Vasculopathy. I have a great deal of contacts within the community, one of which I recommend speaking to time and time again.

I would connect with “Jim Bornac” – Vasculitis Advocate
https://www.facebook.com/bornac

His knowledge on Vasculitis never ceases to amaze me. I did a walk for Vasculitis a few years back with my son with Vasculitis Canada org, met some amazing people there. I sent him a message just now inviting him to join this discussion.

I hope you get the answers you’re looking for!

Good luck my friend.

Sincerely,
Martin

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I don’t need any answers now because my husband passed from cancer after getting him in remission from Wegeners . When he was diagnosis they thought vasculitis was a symptom of Wegeners but now they know Wegeners is a form of vasculitis. They believed it could have been caused by stress. My husband was a painter and never wore a mask to protect him from inhaling fumes. He did one job where there was deadly mold which could of caused it since it began in his lungs and sinuses. Also they linked Wegeners to scaling of teeth which he had a lot of that done. I don’t believe there is a link to food. Also when my 13 yr old son died in a freak accident they planted a tree at his middle school and he went almost everyday to water it and sprayed pesticides to stop the bugs from eating the leaves which he could have inhaled. That could be a link to food is the pesticides they use on fruits and veggies to stop the bugs from destroying the crops during growth. I believe it was something he inhaled or from the tooth scaling since it started in his lungs and nose.

I’m so sorry to hear that @ccorrconro. My prayers are with you and your family.

Martin

@mswanda Good evening mswanda, I had previously spoken with another person on the Mayo Forum whose husband had several seizures and later was diagnosed to have Wegener’s disease. My youngest son keeps his illness private but he has had continuing seizures After quite awhile while his doctor was trying to find out why, a new doctor has taken 3 biopsies along my son’s left shoulder near his neck. He has planned his funeral and is giving his dearest possessions away. He does not want me or anyone to talk to him about it. I lost my dear husband six months ago and now my grieving includes my baby, my last of eight children. I cannot hold him and console him and my heart i breaking once again. I buried his brother who died when hit by a hit and run driver never
caught in 1996. Now my youngest son is ill and preparing to die. Is there any dis ease that mimics Wegeners that is non lethal? I am grasping at straws? Thank you for anything like this that a dear one or yourself has suffered.

@emmur16

@mswanda Good evening mswanda, I had previously spoken with another person on the Mayo Forum whose husband had several seizures and later was diagnosed to have Wegener’s disease. My youngest son keeps his illness private but he has had continuing seizures After quite awhile while his doctor was trying to find out why, a new doctor has taken 3 biopsies along my son’s left shoulder near his neck. He has planned his funeral and is giving his dearest possessions away. He does not want me or anyone to talk to him about it. I lost my dear husband six months ago and now my grieving includes my baby, my last of eight children. I cannot hold him and console him and my heart i breaking once again. I buried his brother who died when hit by a hit and run driver never
caught in 1996. Now my youngest son is ill and preparing to die. Is there any dis ease that mimics Wegeners that is non lethal? I am grasping at straws? Thank you for anything like this that a dear one or yourself has suffered.

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I am so sorry for your loss and private grieving. It is so hard to lose someone you love dearly. We have Lynche’s Syndrome a mutated cancer gene in my family. I have had to give them all back to God. My daughter was 29 4 days after her Birthday. I’ve had Cancer too. My daughter told me about 3 weeks before she left this world that sometimes God needs an Angel home sooner than others. If you need some one to chat with let me know. Hugs and prayers 

@emmur16

@mswanda Good evening mswanda, I had previously spoken with another person on the Mayo Forum whose husband had several seizures and later was diagnosed to have Wegener’s disease. My youngest son keeps his illness private but he has had continuing seizures After quite awhile while his doctor was trying to find out why, a new doctor has taken 3 biopsies along my son’s left shoulder near his neck. He has planned his funeral and is giving his dearest possessions away. He does not want me or anyone to talk to him about it. I lost my dear husband six months ago and now my grieving includes my baby, my last of eight children. I cannot hold him and console him and my heart i breaking once again. I buried his brother who died when hit by a hit and run driver never
caught in 1996. Now my youngest son is ill and preparing to die. Is there any dis ease that mimics Wegeners that is non lethal? I am grasping at straws? Thank you for anything like this that a dear one or yourself has suffered.

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Welcome to Connect, @skunklady13.
It is incredibly hard to lose someone you love and it just isn’t right to have to say good-bye to our children. Thank you for sharing your story with @emmur16 and @mswanda.

Liked by fastfay

@emmur16

@mswanda Good evening mswanda, I had previously spoken with another person on the Mayo Forum whose husband had several seizures and later was diagnosed to have Wegener’s disease. My youngest son keeps his illness private but he has had continuing seizures After quite awhile while his doctor was trying to find out why, a new doctor has taken 3 biopsies along my son’s left shoulder near his neck. He has planned his funeral and is giving his dearest possessions away. He does not want me or anyone to talk to him about it. I lost my dear husband six months ago and now my grieving includes my baby, my last of eight children. I cannot hold him and console him and my heart i breaking once again. I buried his brother who died when hit by a hit and run driver never
caught in 1996. Now my youngest son is ill and preparing to die. Is there any dis ease that mimics Wegeners that is non lethal? I am grasping at straws? Thank you for anything like this that a dear one or yourself has suffered.

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You and your family are in my thoughts and prayers. I hope that you can find a place to express your loss and grief. Perhaps you can find a support group in your community. Sharing is an important part of any loss experience. Take care of yourself.

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