Shannon Rose’s Glow Story

Diagnosis: Coats’ Disease & Neovascular Glaucoma

When Shannon was just two years old, her mother Rosemary started to notice that her eye was drifting. Rosemary was concerned enough to bring Shannon to an ophthalmologist for a thorough exam.  The ophthalmologist discovered Shannon had 20/200 vision in that eye and prescribed glasses for her. He also started her on a patching program.

In the following weeks, Rosemary and her sister Kathy noticed a Glow in Shannon’s eye in many of the photos they took.  Shannon was also having a very difficult time with the patching regimen.  During the next visit to the ophthalmologist, Rosemary expressed her concerns.  It was at this appointment that he noticed fluid in the back of Shannon’s eye.  They were sent to Dr. Carol Shields at Wills Eye Hospital in Philadelphia.

Under anesthesia, it was confirmed that Shannon has Coats’ Disease. Coats’ Disease is a rare congenital eye disorder that is characterized by abnormal development of blood vessels behind the retina. Fluid can leak from these vessels into the eye.  After six procedures the doctors were able to stop the fluid from forming in the back of Shannon’s eye.  Unfortunately, her retina did detach. Along with that, scar tissue had formed leaving Shannon blind in her affected eye.  Shannon did very well but at the age of five, Rosemary noticed Shannon’s eye drifting again.  Shannon underwent surgery at Wills Eye with her ophthalmologist Dr. Kammi Gunton to successfully correct the alignment of her eye.  Shannon again spent several years without issue.

In February of 2015, when Shannon was 11, she awoke with a very red, irritated, aching eye.  It was quickly discovered that she had developed Neovascular Glaucoma.  Despite trying to alleviate her discomfort with medication, Shannon was not able to get her pain under control. In July of 2015, after several months and careful consideration, Shannon and her family decided to enucleate her eye.  Shannon did very well with this procedure and loves her new prosthesis.

The best news is that she is no longer in any pain!  Shannon is now a very happy, thriving, beautiful, 11 year old 6th grader!  Shannon and her family hope that in sharing her story families of other children will recognize the warning sign that is “The Glow” in photographs and find their way to care in time too!