| My Xiaflex Journal |
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02/07/2011 23:57
jocond 
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02/07/2011 23:57
jocond
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Re: My Xiaflex Journal
dianataylor:
My understanding is that the gene is passed from mother to son and father to daughter even if the one that passes the gene does not show signs. You are correct that it seem to be mostly descendants of northern European which I am.
Just an aside. I used to tease my Dad that he could have given me his wavy brown hair or his brown eyes...but he gave me this
This crazy disease has no prefernce on gender, I'm a male and my father(4 surgeries) also had DD. I dred the day to have surgery. I'm only 42, had N/A on both hands, Xiaflex in clinical trials on right hand and also suffer from ledderhose on both feet.
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02/08/2011 02:06
marigail
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02/08/2011 02:06
marigail
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Re: My Xiaflex Journal
How did you make out with the Xyaflex in the trials?
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02/08/2011 11:09
jocond
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02/08/2011 11:09
jocond
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Re: My Xiaflex Journal
marigail:
How did you make out with the Xyaflex in the trials?
Xiaflex does work. It worked well on my right pinkie and ring finger but in my case it had returned in less than a year.
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02/08/2011 13:03
abba55 
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02/08/2011 13:03
abba55
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Re: My Xiaflex Journal
If it returned in a year, then it really is no different than the N.A. Procedure which for me lasted 18 months. I am pretty sure that with surgery the recurrence rate is pretty low.
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05/05/2011 17:23
DCinNYC
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05/05/2011 17:23
DCinNYC
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Re: My Xiaflex Journal
It has been 6 months since my Xiaflex injection and the finger has full and normal flexion with no lingering side effects. I had monetary assistance with my insurance co-pay from Healthwell Foundation (http://www.healthwellfoundation.org/). I recommend this therapy highly - it appears to be the answer to this insidious condition.
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05/09/2011 18:45
marigail
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05/09/2011 18:45
marigail
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Re: My Xiaflex Journal
That is really great news!! I have to have a second shot in the pinkie finger next month. (Vacation plans is what is postponing this). Where I had the first injection, I had success, but there is another cord that wasn't apparent until I got the partial straightening. We're hoping this will do it. I'm not looking forward to it---it was quite uncomfortable for a few weeks, but I need to do this.
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