HI there! I am new to this board and I am in desperate for some answers. I have recently become a care giver for a young 32 year old woman who has been diagnosed with SUSAC'S DISEASE. It is an autoimmune disorder that attacks your vision, hearing,loss of bowel control and a host of other things. She has had this for a couple of years now. There are only 201 people in the world that have ever been diagnosed with this horrible disease. Most doctors in our state have refused to care for her due to not knowing how to treat the disease nor wanting to be liable for her. She has had to leave our area to go to a MAYO clinic to receive some treatments such as IVIG and Steroid shots to keep from losing more of her vision and hearing.

I spent the morning with her at our local hospital where they agreed to take her in a few days ago as she had another bad spell. She is literally fighting for her life. She has been vomitting, in chronic constant pain with horrible headaches, I was with her as she lost the last of her vision in her left eye. Today she has chest pains and fainted as she was walking out of the bathroom. I couldn't get to her fast enough and she hit her head on the floor as I called for all the nurses. I think she may have had a stroke on the left side. She said she felt tingly and numb on that side as she was fainting. The doctor came in tested her and she did not feel anything has he used a pin and pricked her along her body in various locations. I wanted to just cry. Actually she, her mom and I all were teary. It's hard not to be. She is a wonderful lady who has such a great attitude in the middle of all this. Her husband left her when she got sick and she is raising two small children alone.

My question is....does anyone out there have this? Do you know anything that will help us get her help. She is in the fight of her life.
Thank you everyone! From the bottom of my heart