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Old Fri Nov 28, 2008, 01:08 PM
Neil Cuadra Neil Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,553
I'm very sorry to hear about your repeat diagnosis after so many years, squirrellypoo, and I hope treatment is as successful the second time around. If they recommend ATG again, do you know if it would be horse ATG or rabbit ATG this time? Professor Marsh is doing a clinical study on this. The study description says "Rabbit ATG is more commonly used for a second course following relapse or lack of response to a first course of horse ATG" but the relapses they've studied in the past have probably been a lot sooner after the initial treatments than yours. You are likely correct that you're a source of discussion for the doctors.

Your situation will be alarming news to others who thought they were past their childhood AA. What a shock it must have been to hear the same diagnosis, with the addition of PNH.

Having a good treatment response last time, having a top-notch doctor who knows PNH too, having a healthy lifestyle, and having a supportive fiance are all big factors working in your favor.

To increase your chances of finding other AA patients in the U.K., you could post in our Your Local Area forum. You could also ask Professor Marsh if she knows of local or national support groups. The more people you have on your support team the better.

Please keep us posted.
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