I had this elsewhere and the link is now dead. So I went online and found it so that we all have access to this if we need to explain to a friend what our crazy disease is all about. I will also make a little booklet type thing so that we can print it out and understand better. I'll try and laymen-ize it. Wish me luck.
<iframe src="//www.slideshare.net/slideshow/embed_code/key/aCvWknCw06kxVM" width="595" height="485" frameborder="0" marginwidth="0" marginheight="0" scrolling="no" style="border:1px solid #CCC; border-width:1px; margin-bottom:5px; max-width: 100%;" allowfullscreen> </iframe> <div style="margin-bottom:5px"> <strong> <a href="//www.slideshare.net/ameenrageh/granulomatosis-with-polyangiitis-wegeners-granulomatosis" title="granulomatosis with polyangiitis (Wegener’s granulomatosis) " target="_blank">granulomatosis with polyangiitis (Wegener’s granulomatosis) </a> </strong> from <strong><a href="https://www.slideshare.net/ameenrageh" target="_blank">Ameen Rageh</a></strong> </div>
Wegener's Granulomatosis. A rare auto-immune disease affecting 1 in 30,000 to 40,000 lucky winners. I'm one of those winners. Diagnosed in May 2010, life has changed dramatically in some cases for the worse and in some for the better. This is where I ramble on about my observations with this new friend called Wegener's - which makes me a Weggie (pronounced 'weg-ee')
Your just amazing with all your knowledge and inspiration for all to read and have hope. Thank you for sharing your story and it gives us all such hope and understanding. I look forward to a type of book for family and friends as I am tired of trying to explain it over and over and over,but yet some say it's not real.
ReplyDeleteI look forward to your book and thank you again for sharing
Thanks Sue, You're pretty awesome yourself. It's been great talking to you on the phone since this post and as I said to you in person. We get more out of this disease than it does out of us. We now have wonderful friends around the globe that we would never have met without having WG, so take that you stupid disease.
DeleteMarta, I was just talking to Alysia and we were discussing how you are the only person I know that contracted WG from a vaccine. Have you ever heard of anyone else? There have got to be more out there?
ReplyDeleteHi Crowneagle, yes, I do know others who have gotten sick right after the vaccine. Mine was strange because it took my first flare after diagnosis to make the connection (with the help of Sangye from the forum) and I put it out there, and then a few people came back and once putting the H1N1 vaccine variable into their timeline, things started to click. I know a lady from Sweden also gives credit to the vaccine, a gentleman in the Eastern US, a young girl here in Alberta. There is a study in the BJM that links H1N1 vaccine to increased incidence of vasculitis, and also the actual h1N1 insert mentions vasculitis as a possible side effect. You gotta dig deep but it's there (although I have a feeling they've changed the insert since 2011 (when I got a copy of it) and it is no longer in there (I checked a couple of years ago and couldn't find it). I've since stopped caring about it because I know it's my trigger so it's my issue (and my daughter's) and trying to convince people with a predisposition to autoimmune disease to be cognizant about their decisions regarding vaccines is like herding cats. There's way too much positionality on this topic for me to try and help people who don't want to be helped. So vaccines are something I personally avoid like the plague, but I've stopped trying to help other on this particular topic. There are many rheumatologists, and immunologists who are now linking vaccines with a whole range of autoimmune triggers, but it'll be accepted by society when it is its time. I'm just ahead of the wave (sadly I got that spot the hard way, but such is life ;) So yes, there is a lot more, but people don't want to believe it because it involves questioning authority (another thing you get training on when you get Wegener's - constantly questioning so called authority in doctors who don't know the disease but think you should be doing what they say only because of their many years of schooling.) But that's a whole different story.
DeletePeace!
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