Trust Yourself and Call Pediatric Eye Consultants

Ectopia lentis et pupillae sounds like a strange and exotic disease one would contract while traveling internationally. While it is highly unusual, it is actually a rare, genetic eye condition that both of my boys, ages 8 & 10 have inherited. Somehow, my husband and I have this recessive gene that expressed itself not once, but twice in both our children. It is so rare, I have only connected with three other families that are dealing with the same condition in their children.

She often said that realistically, they would never have the vision-clarity to be fighter pilots, but we could let ourselves believe they could drive a car someday. I really appreciated how she gave us reasonable ‘attainable hope’.

Ectopia lentis et pupillae with lens subluxation (dislocated lenses) is as confusing as the name implies. Thankfully, with the help of pediatric ophthalmologist Dr. Dawn Duss, we have been able to manage the boys’ condition beautifully. My oldest used to be legally blind, even while wearing glasses and now sees 20/25! When we first learned that he was off-the-charts nearsighted, we never dreamed he would have such excellent vision. Dr. Duss is the reason he has achieved this awesome level of vision. The same is true for my younger son as he sees very close to 20/20 in glasses as well.

Appreciate The Vision Your Children Currently Have

When the boys started seeing Dr. Duss, the cause of their vision difficulties was still unknown. They had faulty lenses and their pupils were small, challenging to dilate and my youngest son’s pupils are off-center. As a parent, the unknowns were very hard to handle. With Dr. Duss’s calm reassurances, it made it easier to focus on how well they were doing with the vision they did have, as opposed to remaining fearful about the vision they didn’t yet have.

Dr. Duss never sugar-coated anything for us which I truly appreciated. Her truthfulness coupled with her high level of skill and ability as a doctor and surgeon, kept us hopeful that regardless of the boys’ vision outcomes, they would be successful. She often said that realistically, they would never have the vision-clarity to be fighter pilots, but we could let ourselves believe they could drive a car someday. I really appreciated how she gave us reasonable ‘attainable hope’.

Could Removing The Entire Lens Really Help?

It took about two years and diligent research by Dr. Duss, but eventually, she was able to piece together the boys’ symptoms and give them a proper diagnosis (finally!). While there were still many unknowns about this rare condition, knowing what it was helped Dr. Duss develop a treatment plan to best fit their needs. Eventually, she determined surgically removing their lenses would be beneficial. It would be tricky as their lenses were ill-formed and already somewhat detached, but after exhausting other options (try contacts on a feisty five-year old boy!), it was time for surgery.

My husband and I trusted Dr. Duss implicitly. While we sat in the waiting room during each of the surgeries (four total, as each boy had their lenses removed one at a time), the biggest comfort to me was that I knew Dr. Duss was a patient and highly skilled surgeon. It took a few months of healing, but with each boy, the lens removal improved their vision dramatically.
The bottom line is, if my husband and I could trust Dr. Duss with our boys’ vision in this big and dramatic way, it should be easy for you to trust her to give your children eye exams. Along with her amazing staff, you will be made to feel comfortable and welcome as soon as you walk in the door.

With any luck, my boys and I will see you there soon!

– Diana DeVaul, MSW, blogger and Parent