Hey everyone - I haven't popped in for a while but I do read every word that you write, and am really appreciating the way you're supporting each other. I don't have an arachnoid cyst, but I do have a rare form of leukemia, and like you guys there aren't a lot of people I can talk to who also have this, it's hard to find a physician who REALLY knows how to treat this, and it's a lot of work to dig up information and be my own best advocate. Debbie, I encourage you to reach out to others in the support groups who live near where you live as our peers often have the very best information in terms of which physicians are the best in dealing with a rare disorder. If that doesn't help I would be happy to work with you on research. All of us deserve the best care, and while it may take more time and more work than we'd like, we will get there, right?
Keep in touch, and keep on writing,
Pat
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Hey everyone - I haven't popped in for a while but I do read every word that you write, and am really appreciating the way you're supporting each other. I don't have an arachnoid cyst, but I do have a rare form of leukemia, and like you guys there aren't a lot of people I can talk to who also have this, it's hard to find a physician who REALLY knows how to treat this, and it's a lot of work to dig up information and be my own best advocate. Debbie, I encourage you to reach out to others in the support groups who live near where you live as our peers often have the very best information in terms of which physicians are the best in dealing with a rare disorder. If that doesn't help I would be happy to work with you on research. All of us deserve the best care, and while it may take more time and more work than we'd like, we will get there, right?
April 14, 2010 - 5:34pmKeep in touch, and keep on writing,
Pat
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