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Post Info TOPIC: Crosslinking options in Europe


Member

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Posts: 8
Date: Sun Apr 20 1:37 PM, 2008
Crosslinking options in Europe
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I am a first timer. My son Zack is newly diagnosed with KC at an early stage.  We live in Chicago and there is no crosslinging option for him here (there are some trials, but not for his age). I was able to reach Dr. Sporel in Dresden (I was amazed he answered his phone and we spoke - this kind of thing is not likely in the US w/ doctors of his status) and found out, after he reviewed Zack's records he'd be a good candidate for crosslinking.  I am hoping the Dresden MDs can do the procedure soon.  If not, can you tell me other cities and MDs in Germany and Europe that offer the crosslinking procedure? Also, I am a nervous mother right now and would love to hear about other experiences w/ X-linking and how they went.  Appreciate your time and feedback.  Thank you..

Lisa

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Member

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Posts: 23
Date: Sun Apr 20 2:41 PM, 2008
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Hi Lisa,

I took my, then 15-year-old, son to see Dr Markus Kohlhaas in Dortmund.  Members of this forum seem to have only good things to say about him and our experience was certainly a very positive one.  The procedure seems to have stopped any progression of the KC.  I believe Dr. Kohlhaas has performed the procedure on patients as young as 11.

There are quite a few other places performing the procedure in Europe and elsewhere.  There's a thread here on "Who is performing x-linking?" that lists a bunch.

There is also a doctor in California who performs x-linking without removal of the epithelium.  Most forum members seem skeptical of this procedure (for lack of published trials and such), but who knows?

It's unfortunate to find KC in someone so young, as the condition can, potentially, progress quickly in younger patients.  However, it's certainly good luck that you've had it diagnosed in a very early stage.

All the best of luck with your son.  You may want to keep us up to date with your thinking and decisions, as there is a lot of experience on this forum, and everyone is always eager to help.

-Gary

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Veteran Member

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Posts: 45
Date: Mon Apr 21 4:10 PM, 2008
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Lisa, I just wanted to extend a word of welcome ande extend an offer of support from another KC mother. My son was diagnosed at a much older age (22), and was treated with intacs+epi-on crosslinking a year ago, and is doing very well.

I will send you a private message on this forum with my email address, if you have any other questions, or just need to talk to another KC mom.

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Joanne in NY


Member

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Posts: 3
Date: Fri Oct 3 12:13 PM, 2008
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I would like to ask you advice if UVA-Riboflavin Cross-Linking of the Cornea is possible method to treat 4 steps, advanced keratoconus or some other methods to avoid the cornea implantations

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