Our Experience

Living with Aniridia: Ways to Support a Child with Aniridia

Get Informed
As parents who have walked this path as well, we can tell you that getting informed, and learning as much as you can about this disorder will give you the tools to understand it. The more you know, the more armed with knowledge you are, the more equipped you will be to handle whatever comes your way. There will be many unexpected twists and turns, but that’s how life goes! As a parent, you are your child’s first and most powerful advocate, so learn everything you can about aniridia.

Community is Key
Peer support is another aspect that can really help ease the tension, and knowing others out there are facing the same challenges can really take some of the weight off your shoulders. If you want to talk to parents who have been there personally, feel free to reach out to us, connect with us on social media, or check out the many resources we have provided throughout this site to learn more.

Medical Support
Aniridia presents a myriad of challenges, the majority of which are medically-related, and it is absolutely essential to develop a team who understands the needs of your child. It is imperative that you have a pediatrician who is fully aware of the intricacies of aniridia, and can connect you with the other medical specialists that may be required to manage your child’s healthcare, particularly in regards to establishing a relationship with a pediatric opthamologist. Due to the sensitive nature of aniridia, children with this disorder must be monitored quite regularly for glaucoma and other related complications.

Creating a Nurturing Environment for the Aniridic Child
It is highly beneficial to create an environment in which your child can, not only be comfortable in, but also thrive within. Glare and strong light can be difficult to deal with, as a lack of iris causes the eye to lack the ability to regulate the amount of light that enters the eye. Due to this, ensure that whenever indoors, your child is positioned away from direct sunlight, and if possible, keep their back facing the light source.

When outdoors, it is exceptionally important that your child wear protective sunglasses, as well as sun hats to minimize the amount of light.

Visually Stimulate
Babies, whether they are aniridic or not, see high contrast objects and patterns best, so use this knowledge as inspiration and keep it in mind when choosing toys, books, and items for their living space. Black and white, as well as bold primary colors in high contrast are ideal. If you want to take this concept even further, you can consider yourself as part of your child’s learning environment, and dress in a similar, high contrast manner.