Resources for a Family of Diseases
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Submitted by Anonymous on Wed, 2007-11-14 14:29.
On January 29, 2007, we lost a dear friend to Wegener's granulomatosis. Jeremy Johnson's death changed everything for us, and even more so made us realize how valuable and short our time is. The fact that we watched Jeremy get sicker every day without anyone knowing what was wrong makes us furious to no end. It's made us feel that if there is anything we can do to help, it needs to be done. One of Jeremy's last thoughts was that he was going to be able to go kayaking with us as soon as he felt better. "Miah," as we called him, never had that chance. It's our memory and love for him that is driving us to help others and make a difference. On June 15, 2008, myself and Brett Tanner will undertake a 1,321 mile sea kayak voyage down the entire west coast of California. Our intentions are to raise awareness and money for the Vasculitis Foundation. Jerry Sparks Apple Valley, California Growing up with Jeremy as a brother was like any other brother or sister growing up. We use to pick on each other and fight like we all did growing up. But after we grew up Jeremy was not only a great brother he was a great friend. The last year he was with us I would call him almost every day just to see how he was doing. I was hoping to hear that he was having a good day. Those words did not come from his mouth to often but when they did it was like music to my ears. I still to this day pick up my phone and think about calling him just to see how he is doing. I just want to hear his voice one last time saying "I’m doing fine don’t worry about me". Like I said before he was a great brother and a great friend. I love you very much Jeremy and you will always be missed. Chris yeah . .. Thanks, good article Wow...what can I say?? Jeremy and Chris were childhood friends of my brother Scott and I. I know he (my bro) is just as shocked and saddened as the rest of my family and I are. My parents hung out with his parents, playing cards, etc. So we played together the 4 of us, though I was the only "girl." Didn't matter to us kids.. I can't remember exactly who it was, Chris or Jeremy, but we both got into trouble at the young ages of what? 5-6 maybe? For playing Doctor!!! LOL! My parents had become reaquainted with Mr. and Mrs. Johnson these last couple of years, when they moved into my parents neighborhood!! And of course became fast friends again, (never thought of otherwise I am sure, being Dad and Mr. Johnson were/are in the same line of work) And my bro got to see Chris and Jeremy too, I believe, before he passed. (I am all the way in BFE Texas!) You guys are doing something phenomenal. I think it's the best..I will be keeping track of your trip, and I know Jeremy will be riding along.. Yours in Friendship, Stacey |
Medical ConsultantsVF medical consultants provide advice by telephone or e-mail to physicians who treat patients with Vasculitis.
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About Vasculitis Foundation
The Vasculitis Foundation (VF) is the only international organization for patients with Vasculitis. Founded in 1986, VF provides patients and family members with practical information and coping strategies to live successfully with Vasculitis.
Mission: The Vasculitis Foundation supports and empowers patients through education, awareness and research. Learn more
As a very close friend of Jeremy's "Miah" as we called him, I accompanied him to many doctor's appointments through his illness, my husband and I along his side through the very difficult struggle. I watched doctor's as they were perplexed by his symptoms. I am still angered over the lack of knowledge on the subject. Too many doctors are totally unfamiliar with this condition and therefore ignored very obvious symtoms for way too long. It is my hope that through the loss of Miah's life, many others will become educated on the disease so that diagnosis can occur and treatment can be given before it is too late.
Despite seeking very regular medical care, Miah was not diagnosed until barely a week before his death. He suffered for two years with increasing symptoms as Wagener's damaged his body, and doctor's could find no cause.