News coverage…

June 21, 2007 at 11:34 pm

Unfortunately it is so difficult to get awareness out for what many believe to be “orpan” illnesses. In other words, not enough people have them, so not that many care about them. I gave up telling people I have CIDP long ago, now I say Chronic GBS. Even that doesn’t ring a bell around here, even with most nurses. My son has done two long articles for me for our local newspaper, but I am just lucky that he happens to be a jouralist for them. Even though I know so many people read them, now they don’t still know what I have. I wish there was more we could do for awareness, but until it strikes someone in their own family, no one seems to want to know too much.