Eve,
It's no fun being a "unique case," because it means that the doctors have less information from other patient histories to rely on.
My wife was a unique case too. The one benefit was that it led her hematologist to review her case regularly with the hospital's entire hematology team, and we benefited from their combined experience.
I think it'll help to encourage the doctors who are treating related health issues to talk to each other. If you agree, I suggest that you make sure that they know that you favor the idea.
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