I felt like I just had to say something. It has been annoying for the past few months. In the last two days I have read an article providing information about FTD and information about a conference. Both of them stated that the information/conference would be helpful for physicians, nurses, and caregivers. Do you see something missing there? HELLO, I’m here. I am a person who has FTD that can reason, communicate and has a great deal of insight into my illness.
Guess what? There are others in this world like me. It is frustrating to live in a world where most people don’t understand what you have and the people that do assume that everyone who has it is aggressive, apathetic to others, has extreme personality changes, etc.
Perhaps that will happen to me but there are variants of FTD which exist in which the person who has it does not become aggressive, apathetic to others and has extreme personality changes.
As I said in my last post. FTD is underdiagnosed even in patients who have “typical” symptoms. Most physicians who see patients don’t see people like me until they are in a later stage if at all because we do not have the “typical symptoms.”
It is a frustrating situation for every one. I just want to let people know that there are people who have FTD that are actually posting messages, blogging, chatting, researching information about FTD and getting information from conferences.
One of them made a film, another one wrote and published a book. Some of us are still here and making a difference in this world.
I am dying 