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Re: Re: Re: new to this
Submitted by susie on 05/Dec/2008 in reply to Re: Re: new to this posted by Essgirl on 04/Dec/2008
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It's sounds like you have had quite a few complications from your resection--I'm so sorry. Please let us know the results of the CT scan!!! Even though the research says there are 200 cases worldwide each year--the research is old and I don't know of any registry or organization that is counting. My own guess is that the number is higher. Now, as opposed to five years ago, there are drugs that can at least stabalize the disease for a time. Ben's disease has been stabalized for over 2 years now. Take care and please keep in touch!!!
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