When we were 18 years old my best friend was diagnosed with a disease that sounded more like our dream vacation than the thing that life. That was 20 years ago, two weeks ago I lost the one person that knew everything about me and vice versa. I found out 1 day too late to go to the funeral, and didn't get to say see you later.
Today I log on and find an article titled "Surgery blurs line between life and death" Talking about how there is now a way to really help her. Two weeks too late. I am angry and hurt and disillusioned about the treatment she recieved throughout this whole ordeal. We traveled between NYC and Iowa to get her help, and all we got were medications that strained her abilities, and left her loopy, how wrong is that? How do you deal?

I am so sorry about your friend. My daughter was misdiagnosed by Dr's in our area for 10 years resulting in 2 strokes. My sister was dx first and the neurosurgeons in VT. told us they had done this surgery 100's of times. They had not it cost my sister 5 strokes after her 1st side and a massive infection the 2nd time resulting in 2 more surgeries and the removal of part of her skull! My opinion about treatment for this disease is use your judgement and pick drs that are qualified only! Find literature they have written and verify their credentials. If not for this site my daughter would have faced the same possible outcome! but we found Dr. Scott right here thank God and D.J.  Charl

Just want say sorry about your friend. You have the right to have those feelings. I am from Iowa and was diagnosed with moyamoya in 2002 at the University of Iowa Hospitals. I could not have asked for better care. Dr.Patrick Hitchon did my revascularization by-pass surgery in 2003 and have had only one TIA since then. I deal with this disease just one day at a time.

Take care and godbless, Skay

I am deeply sorry for the loss of your friend.  There aren't any words that will make what happened ok.  
You, as well as her family are in my thoughts.  

The sad truth is that there are not enough doctors who have the knowledge and experience to treat this disease and fewer still who will admit that they aren't qualified and help their patients find a doctor who is.  As a result, moyamoya often goes undiagnosed, underdiagnosed or in your friend's case,  mistreated.  It is frightening, frustrating, infuriating and on and on and on...

What we can do is EDUCATE, EDUCATE, EDUCATE.  Tell everyone you know about this disease - it's signs, it's symptoms, and above all, that it can be treated by some wonderfully dedicated, experienced doctors.  Tell your doctors (mine had never even heard of it when I was diagnosed).  Trust your instincts about your own health and treatment.  Always be your own advocate.  Care for and support the patients and families who have been affected by this disease.

Peace to you.