I found this on the CIDP Facebook page, and thought that it would be another way to follow demographics: "I've looked into the whole Mapping Us thing .. and for right now, I do believe this is the best solution. IF you want to be on the map, Please visit http://bit.ly/16JCopC . When adding your "Marker" please use c1dp! as the password. You can add as much or as little information as you want. I am still working through the permissions so bear with me. I will eventually get this map added to this page under the tabs up top."
Thanks to the person who posted this- maybe we can help her out.
I am also a member of the CIDP group on Facebook, and I am really enjoying the interaction in there. Like here, everyone is friendly and helpful and loaded with information. I also tried to get on that map, but got a message saying I needed or was awaiting some sort of approval. It is a great idea, I think so anyway, to connect and know where your friends are. I can assume that there are different treatments available in different areas of the country. And it's rather like chat from the old days, we all got to know each other so well, it was like our extended family, as it is here, but there is much more "chatting" in there and that's nice too. Will continue to try to get on that map, and learn to navigate it. Who ever came up with the idea was awesome. As we get to know one another, we also grow and are building friendships, and right now, this is vital to most if not all of us at this point. I've come to make it my habit to stop in here and there first when I come online just to catch up with folks, and I always come away having learned something new and informative to share with my doctors. Just feeling pretty grateful to have found these two groups and how we are so easily able to share our stories, find similarities as well as differences. And making the friends our new family is always a comfort as well. And for this, I am truly grateful. ~ Sis ( aka Tammy )
You have to cut and paste the password (it is also case-sensitive): c1dp!
Sis said:
I am also a member of the CIDP group on Facebook, and I am really enjoying the interaction in there. Like here, everyone is friendly and helpful and loaded with information. I also tried to get on that map, but got a message saying I needed or was awaiting some sort of approval. It is a great idea, I think so anyway, to connect and know where your friends are. I can assume that there are different treatments available in different areas of the country. And it's rather like chat from the old days, we all got to know each other so well, it was like our extended family, as it is here, but there is much more "chatting" in there and that's nice too. Will continue to try to get on that map, and learn to navigate it. Who ever came up with the idea was awesome. As we get to know one another, we also grow and are building friendships, and right now, this is vital to most if not all of us at this point. I've come to make it my habit to stop in here and there first when I come online just to catch up with folks, and I always come away having learned something new and informative to share with my doctors. Just feeling pretty grateful to have found these two groups and how we are so easily able to share our stories, find similarities as well as differences. And making the friends our new family is always a comfort as well. And for this, I am truly grateful. ~ Sis ( aka Tammy )