Guest Post: Growing Up With Glaucoma

I’m Brent, a 22-year-old linguist from North Carolina. I was born with congenial (childhood) glaucoma and microphthalmia, which means that I had underdeveloped eyes. I lost sight in my left eye at age 3 after many surgeries, and my right eye was diagnosed with glaucoma at age 5.

Glaucoma is a lifelong condition. We seek to safeguard the health of the optic nerve, which is threatened by elevated intraocular pressure. Glaucoma treatments involve medications focused on increasing the outflow or decreasing the amount of aqueous fluid produced. Surgeries also center on providing additional outflow methods (shunt surgeries), or decreasing production (laser surgeries).

If you have a child with glaucoma, I want you to know that they should nurture their gifts and interests! Growing up, I’ve participated on the school swim team, in school plays, done volunteering and pursued various other interests. Since then, I continued to study Spanish Linguistics and Literature, and now I’m finishing my Masters Degree in Linguistics, with a focus on second-language acquisition and instruction. This fall, I’m deeply grateful for the opportunity to teach in Spain as an English-language assistant.

When I was born, a doctor told my parents that they were raising a child, not an eye. Children with glaucoma can live full lives. Childhood glaucoma is serious; children with glaucoma often have reduced sight, be it in acuity and/or periphery, limited night vision, and have to pursue treatment in order to maintain the healthiest vision possible throughout life. They may have to approach activities differently, for example, they use accommodations in P.E., need a flashlight to get around backstage in a play, or may have to figure out other ways to compensate for peripheral vision during a backstroke, but these obstacles can be accommodated. Of course, one large part of providing children with glaucoma the best opportunities to pursue their vocations is medical care for the best vision possible.

In my case, the Icare tonometer has allowed my family and I more detailed medical information, allowing us to monitor pressure spikes and drops after surgeries (in the right eye, the Baerveldt shunt and photocytocoagulation surgery). We also have more diurnal information about trends throughout the day for medication purposes. By facilitating access to the Icare tonometer, Saving Kids' Sight is helping other families and doctors gather the most information for clinical decisions, as doctors continue to research medications that can potentially protect the optic nerve, increase pressure outflow, and decrease the production of aqueous humor.

If you are raising a child with glaucoma, I want you to know that you are *not* alone. It is my hope that these resources and community may be of use to you.