Hello families of moyamoya,

So many times this disease is misdiagnosed and misunderstood.  We were persistant and pushed for more testing. We were lucky as it was found early. Some are told to take motrin and go home. When not discovered the patient can suffer a stroke, or seizure with permanent damage.  I have just emailed oprah with an idea for a show on this disease.  I feel DJ should be on the show to discuss his story and how he turned it around to help others. So that getting the word out on this disease on her show can help other families too.  So power is in the numbers so email her and suggest the same idea.  See you on the show........

Hi everyone,

My sister Patty has moyamoya.  She was  diagnosed in december 1997.  She suffered a servere stroke (strokes) in February 2001.  The strokes left her blind, on a feeding tube, briefs and a quadraplegic.  She has fought hard to live.  She had the surgeries at Mayo Clinic in Dec 2002, and Jan 2003.  She is an inspiration.  As we speak, she is at Florida Neurological Institute as an in-patient.  Patty is so with it, she has sight (not perfect), off briefs, no feeding tube, and will walk some day.  Patty was asked to speak at a meeting of "women of strength".  She declined to speak but arranged to have a friend of hers read a paper repared by her with the assistance of our sister Monica.  I sat there and listened.  I lived through all the trials of MM, but when I looked around there was not a dry eye in the place.     Anyway,  I sent the paper to Oprah a few months back but did not hear a word.  

I have sat back and read with great interest the other MM posts.  

I wish DJ had this site 4 or 5 years ago.  The site is wonderful.      
This is my first message.  Hope it is OK

Janice

Hi Janice,  [smiley=wave.gif]

I find strength in the adversity Patty faced and overcame. God bless her! Thank you for sharing that with us. What an inspiration to those who may yet have to face such difficulties of this disease. But I have to say that she has a wonderful family behind her with lot's of love and support. That's soooo important. You guys are her angels. I also feel in my heart that she'll do very well at the Florida Neurologic Institute.
Please keep us posted.

Continued prayers.

Mar [smiley=hug.gif]