I was diagnosed with this disease in June 2018 after a brain hemorrhage in April 2018 while I was in Nursing School.  I had never heard of it.  After doing my own research, I've discovered that although this is a rare disease, it is more common than we all think.  It is very debilitating and it affects people of all races, creeds and colors in many different ways.  Many people can live normal lives with it and many people can't, as in my case.  I, myself, have had a left side temporal by-pass brain surgery on April 1, 2019.  The procedure went well, and according to my latest angiogram, the blood flow in my carotid improved drastically from being completely blocked.  My right side is still 80% blocked and causing me several problems.  I have blindness in my left eye, weakness on my left side (legs and arms), my speech is slurred much of the time, my memory is sketchy, I have problems recognizing words and numbers and processing things, I'm in constant pain from migraines, I cry for no certain reason, I "snap" for no reason.  My brain just can't process things normally as it used to.  Many doctors don't know of this disorder or this disease.  Awareness needs to be spread among the world of this disease.  It is said to be more common in children, but I believe that needs to be looked further into.  People with this disease need to have a backup plan in case they become disabled from it.  I believe it needs to be added to the List of Impairments in Adults and Children for Disability as a neurological impairment.  This disease does lasts longer than 12 months and can result in death.  People with this disorder may have multiple strokes, brain hemorrhages and TIA's and they can DIE from it!!  THEY CAN DIE!!!  This is a very dangerous disease and the surgeries that we have to go thru are long and dangerous as well.  The cause of this disease is unknown.  It is of Asian origin. Many people have already lost their lives due to the fact that their doctors don't know what to do or how to treat someone with this disease.  They tend to generalize the symptoms and minimize the problem.  We need to maximize awareness all over the world.  Too many people, men, women and children, are dying from this unknown disease and are not being treated properly.  We can make a difference if we can get this information to every doctor around the world, not only to neurologists but to your regular doctors as well.  Then, they'll know the correct routes and procedures to take, the right prescriptions to prescribe. Thank you so much!!