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Thread: I am a family member of a WG survivor

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    Default I am a family member of a WG survivor

    HI, My name is Mary. I have been aware of WG since 1970. My brother was diagnosed after 2 months of not knowing what was wrong with him. He was only 19. I can remember some of it (I was only 14) but not all the medical jargon that goes with this disease. What I do remember is that they did not give him much time. They asked my parents if they could basically use him as a "guinea pig" and try some drugs out on him. We wanted nothing more than to have him well. So of course they told the Dr's to do what they could. Now what I do remember is that at that time this disease was fatal, and my brother was one of the youngest to ever have it. It had reached his kidneys and his lung had lesions. So the Dr's gave him large doses of Prednisone, Cytoxin, Imuran. I am amazed that after 38 years this is still the same drugs that are used to fight it. But what I want all of you to know is that my brother is 57 yrs old and has had a wonderful life. I am so thankful to those Dr's. After my brother got better, he spoke with Medical students, and others who were afflicted with this rare disease. I think that he may of been the first to survive but I am not totally sure. I know that he was the youngest at the time to have had it. The only lasting effect is that he has hearing loss in his right ear. The other miracle is that the Dr's told him that he probably would not be able to have children, but he had a daughter 19 yrs ago. So again, we, his family are so grateful for these miracle. I just wanted you all to know that there is hope and there is life after WG. May God Bless you all, Mary

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    Default Survivor stories are always welcome!

    Hi Mary,
    Aug. will be a year since I was diagnosed and I remember my Dr. being frank with me and said 20 yrs ago, I probably would have died from this dreadful disease. The survivor stories give us all hope with a future to look forward to. Thanks!
    My favorite quote is:"God will either shield us from the suffering or give us the strength to bear it." And that's pretty much how it is for me from day to day.
    Some days are better than others but we learn to deal with it.
    Right now I'm having a harder time trying to take care of my 83 yr. old mother who has rhematoid arthritis and I have a brother who has multiple mylenoma plus Guillain-Barre'Syndrome. I pray for them . It is a big adjustment when something like this happens. I wish the best to everyone out there going through any of these diseases.
    Sincerely, Terri

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    Wow Mary,

    How somethings in life just take shape. I am glad your brother has survived all these years and had been able to enjoy his family knowing that the disease lingers in his system.

    This is to all WG patients who have endured, or who will endured many challenges but many HOPES!

    Here to living in the NOW!

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    Welcome Mary! Thanks so much for sharing your brother's story. It's so great to know of the medical advances that have occurred within the past 40 years... and it's great to know of people who have made it through so well!

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    Hi Mary, welcome to the forums! Thanks for sharing your brother's story. It's a great, positive story for us and for others that read it.

    I get emails occasionally from people that have read the stories on this site. They tell me how much the stories mean to them. These are people that have just been diagnosed or have friends or family members that have just been diagnosed. I'm sure we all remember that first time we heard "Wegener's Granulomatosis" and felt the fear of the unknown. Stories like your brother's mean alot to many, many people.
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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    Hi Mary,

    Your story sounds quite familiar. I was 9 when I was diagnosed in 1977, and although I can't remember details of what happened, I do remember the *surprise* all around when I managed to pull through and endless streams of doctors coming to look at the amazing specimen. Even seven years after your brother's diagnosis, I was still considered one of the early survivors and it's thanks to people like him and a few brilliant doctors who put the pieces together and began to make these sorts of diseases beatable.

    I'd be interested to know how he's fared long term. Has he stayed well, or had relapses? I seem to have a big episode every ten years or so, despite having always stayed on meds.

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    Thank you for all your replies. I wanted all of you to know that there is life after WG. I know that my brother was monitored quite closely for the first 10 yrs after he was diagnosed. He often spoke at seminars, completed college and went on with his life. I am not sure whether he had any more "episodes" or how long he stayed on meds. I do know that he is very active and seems to be very healthy. I will ask him this weekend as we live about 900 miles away from each other and speak by phone. He was at UCLA medical center, and I will be forever grateful to this learning institution. I just know that his disease taught us as a family to never forget to tell each other, "I love you" and to express our feelings to each other. God Bless you all, Mary

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    I just stumbled upon this support group tonight as I was searching out information to give me some hope for my journey with this disease. Your brother's story is very inspiring and I want to thank you for sharing it....it has given me much encouragement. God bless!

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