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Old Sun Mar 22, 2009, 12:32 AM
Ruth Cuadra Ruth Cuadra is offline
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Join Date: Jul 2006
Location: Los Angeles, California
Posts: 616
Hi, Josey63.

Welcome to Marrowforums. We're glad you found us, but, of course, sorry you have to be here. I know people who've had aplastic anemia or MDS for many, many years--but no one with a diagnosis as old as your original one. Do you remember any of the details of the treatment you had back in 1957?

If you haven't already done so, you should contact the Aplastic Anemia & MDS International Foundation and ask for their basic information packet about MDS. It will help bring you up to date about the subtypes of MDS, risk levels and prognosis, treatment options, clinical trials, and dealing with emotional issues.

Please be very careful about interpreting any survival statistics you may read on the Internet or elsewhere. Every MDS is patient is different. You are not the same as any person in any of the studies where those statistics are reported. Since MDS is a rare disease, studies are often done with a small number of patients or over a long period of time. The treatments that are available today are much better than they were only 2 or 3 years ago, which makes older statistics even less meaningful. Don't believe anyone who says you have only 5% chance of surviving one year. It's just not true. Good supportive care and an appropriate treatment plan can help ensure your quality of life for many years to come.

Regards,
Ruth
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Diagnosed AA 10/96, MDS/RA 6/98, MUD/BMT 10/6/98
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