I feel as though this disorder has taken my life as I knew it away from me. I am disabled now. I can’t drive, can’t work, and am lucky on the days that I can walk with a cane without assistance. I am on medication but it doesn’t seem to help very much. Most days I am so weak it is all I can do to get up and do much of anything. I have really bad episodes of EDS where I cannot stay awake not matter what I try.

Also, I have moderate to severe problems with cataplexy on a daily basis. I have also had episodes of nightime hallucinations and sleep paralysis. These episodes are terrifying. I wake up and sense an evil presence trying to get to me and I cannot move or talk or do anything but stare at the evil presence and lay there terrified.

Last night when it happened I was finally,after trying and trying, able to say my husbands name so that he would wake up and help me. It was so awful. I would really like for people to understand this disorder. No one that I have had contact with knows anything about this disorder except for the people at the sleep clinic that I go to. If anyone knows anything I can do to try to raise public awareness of this disorder please let me know. I am really tired of having to explain and no one being able to understand what I am going through.