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Cortical Blindness - Articles

When every one is blinded . . . who shall awake medical research ? by Dr. Sangareddi V. Medical Doctor Posted Wed 29 Feb 2012 11:48am Blindness  brings  doom to most life situations , paradoxically it is supposed make us wiser in medical research . We are made  to  believe , the shrewdness and the accuracy of  a study is directly related to the  degree of blindness . Is blindness  such a great thing ? The fact that medical research requires  tight  blindness  for  ... Read on »
Department of Services for the Blind by Lisa .. Posted Thu 27 Mar 2008 12:00am Yesterday's meeting was wonderful! I had so many questions to ask and finally someone to ask them to! Elisabeth's therapist, Patty, was also able to come. She had some questions of her own and was able to tell Debbie (the lady we were meeting with) what some of her goals are for Elisabeth. But before I write about yesterdays meeting I want ... Read on »
Elisabeth's Eye Exam by Lisa .. Posted Fri 30 Nov 2007 12:00am Well, we are home from Spokane with some new information about Elisabeth. She appears to have cortical blindness. This is visual impairment due to damage to the brain. Her eyes are actaully perfect, but the visual systems of the brain cannot interpret what the eye sees. As of right now her vision is 20/2000. The good news is that she is ... Read on »
Just a quick update to let you k... by Kelly Patient Expert Posted Wed 01 Oct 2008 8:28pm Just a quick update to let you know how Jenelle is doing. So far, we haven't seen a grand mal since UCLA… then again, the teething has died down a bit, so we're positive that played a part in bringing on the grand mal in the first place. Friday, Jenelle had a follow up visit with her Ophthalmologist Dr. Ching. According to Dr. Ching, Jenelle's ... Read on »
Spinal Tap Update by Kelly Patient Expert Posted Tue 26 Aug 2008 11:28am Thank you all for your positive thoughts and prayers today. We are home now with Jenelle and her spinal tap went well. Our only problem was that Jenelle started to get a rash of some sort when she woke up from the anesthesia. Quickly, she was given IV Benadryl and it disappeared as quickly as it started. The nurse said the rash was commonly seen ... Read on »
Why is there HOPE? by Ali Patient ExpertFacebook Posted Fri 02 Oct 2009 3:07pm When I started doing research in to Bray's condition, learning that he was missing parts of his brain was devastating. You automatically assume that because the entire brain isn't there, means that you can't exist. There were hours upon hours of time spent in utter denial because I couldn't wrap my own mind around the fact that he indeed did exis ... Read on »
The All-Transforming Power of Love by Ali Patient ExpertFacebook Posted Sat 27 Mar 2010 3:12am I have previously blogged about The REACH Family Institute (click HERE to read that post) and my ultimate goal is for Brayden to participate in their program in the near future. Hopefully that works out for us very soon... but only time will tell for sure, if we are lead there than it is meant to be. Quality of life has been a major topic ... Read on »
Thoughtful Thursday: The All-Transforming Power of Love by Ali Patient ExpertFacebook Posted Thu 26 Apr 2012 7:32am Quality of life has been a major topic of discussion, and a very sensitive one to me as the mother of a baby who was given a death sentence rather than a "welcome to the world" at birth; as well as having an overfilled heart for all of our little ones who have been given the same prognosis. Hydranencephaly sounds like a horrible way to live, ... Read on »
Repurposed Sight Centers in the Brain by Ashley's Mom Patient Expert Posted Thu 10 Mar 2011 12:00am My sweet Ashley can use inappropriate language quite well. She signs it instead of speaking it, but I learned a long time ago, that not only was she making the signs correctly, she was using them in the correct context. I've never really known where she learned those inappropriate signs. Most of them were ones I had never seen or used. ... Read on »
Is Your Disease on the RARE List™ – If So, More Bad News! by Chris H. Posted Mon 06 Feb 2012 3:01pm I wonder if people truly understand what it means if their rare disease or disorder is on the RARE List™? Last week, the R.A.R.E. Project and  Global Genes Project , leading patient advocacy organizations representing the rare disease community, issued the RARE List™ , a stunning 65 page ... Read on »