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My faith has been restored
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<blockquote data-quote="shellyd67" data-source="post: 445877" data-attributes="member: 6371"><p>I received an email from the Specialist who headed up the drug trial for easy child's disease Idiopathic Chondrolysis, he used quite a bit of medical jargon I did not comprehend and gave me some info to take back to easy child's doctor's about some sort of enzyme block.</p><p></p><p>Something quite disturbing that he mentioned in the email was that he treated a 12 year old boy over 5 years ago and he responded well to the medications and has had no further issues since. </p><p></p><p>However, he just received word that the boys brother has now been diagnosed with the disease. This to me shows a genetic link.</p><p></p><p>With all our research, never have we found anything on siblings or even cousins being diagnosed. We did find out that only 42 cases have been reported since 1989. WOWSY !</p><p></p><p>I hope to hear from Shriner's soon. I would like to get the ball rolling with a second opinion, time is of the essence ...</p><p></p><p>Have a very nice weekend all !!!</p></blockquote><p></p>
[QUOTE="shellyd67, post: 445877, member: 6371"] I received an email from the Specialist who headed up the drug trial for easy child's disease Idiopathic Chondrolysis, he used quite a bit of medical jargon I did not comprehend and gave me some info to take back to easy child's doctor's about some sort of enzyme block. Something quite disturbing that he mentioned in the email was that he treated a 12 year old boy over 5 years ago and he responded well to the medications and has had no further issues since. However, he just received word that the boys brother has now been diagnosed with the disease. This to me shows a genetic link. With all our research, never have we found anything on siblings or even cousins being diagnosed. We did find out that only 42 cases have been reported since 1989. WOWSY ! I hope to hear from Shriner's soon. I would like to get the ball rolling with a second opinion, time is of the essence ... Have a very nice weekend all !!! [/QUOTE]
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