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Keratoconus Journey: Dione

Dione had been living in a “haze” of blurry vision since she was 18 years old. She tried a variety of contact lenses hoping they would help her to see better. However, it wasn’t until 2011, when she received an unexpected diagnosis, that she realized she would need more than just lenses to treat her declining vision.

Living in a Secret “Haze”

Since childhood, Dione suffered from nearsighted blurry vision and opted to wear glasses in an effort to see more clearly. Over the years, she tried a variety of different types of contacts, including Rigid Gas Permeable (RGP) and soft lenses, before deciding that RGP contacts might be the right lenses for her. However, during the first six months of wearing hard lenses, she did not feel like herself, walking around in tears because she could not get used to how they felt.

While lenses seemed to help Dione for a few years, she eventually got to the point where she could no longer ignore the impact her vision was having on her life. As a mother with young children, she would often have to ask her husband what their children were doing (or chewing on!) if they were playing across the room, as she couldn’t see that far. Driving at night was also nerve-racking and something that Dione dreaded daily. One particular moment stands out: when her mother visited her at her home in Texas and needed to be picked up at the airport. On the way home, Dione ran over the median, as she often had difficulty making out where to turn at night. This frightened her mother, as Dione never shared with her, nor her husband, how bad her vision was really getting.

A Long Journey

In 2011, an eye exam through work resulted in an unexpected diagnosis. The ophthalmologist performing the exam informed her that she was living with keratoconus, a progressive eye disease in which the normally round cornea thins and begins to bulge into a cone-like shape, causing distorted vision, and would most likely need a corneal transplant. This diagnosis left her devastated and scared.

After doing some digging and learning about clinical research in a new procedure – corneal cross-linking, Dione visited a local specialist and asked if the treatment was available in the area. At the time, the procedure was not yet FDA approved. Exhibiting caution, Dione decided to wait until the procedure was approved to ensure that she could educate herself with the available information. It was for that reason she started following articles and research, dedicating as much time as she could to understanding the procedure.

As fate had it, Dione was sent to Tampa, Florida on a business trip in 2011 and while she was there, she made an appointment with Dr. Craig Berger from Bay Area Eye Institute, an expert in corneal cross-linking that one of Dione’s colleagues recommended. Given his experience and notoriety, Dione decided to follow him, awaiting FDA approval. Following another business trip to Tampa a few years later in 2018, Dione once again visited Dr. Berger, where she learned that cross-linking was not only FDA approved, but also that she was a candidate to receive the procedure.

Worth the Wait

Dione knew she would need to undergo corneal cross-linking, however, she knew she did not want to go right away., after years of research and waiting, she was ready have the procedure. After she made her decision, she realized it was time to tell her family how bad her vision truly was and why she needed cross-linking.

With the support of her family, Dione underwent FDA approved corneal cross-linking in September 2019 on her left eye, which at the time was more progressed than her right. Dr. Berger made her feel as comfortable as possible, by walking her through the procedure, step by step. That night and for a few days post-procedure, Dione used ice packs and drops to mitigate the slight amount of pain she felt and relied on her husband as a human cane when trying to get around. Less than a week later, Dione found herself walking around and back to her normal routine.

Moving Forward With Clarity

Dione is now wearing glasses and plans to receive cross-linking on her right in March 2020. Following her second procedure, she will then be fitted for scleral lenses. Dione no longer has fears about driving at night and she is able to see what her kids are doing from across the room. She can even walk around without glasses on, having full confidence in her movements.

Find a Cross-Linking Doctor Near You

Search the directory to locate a cross-linking doctor who is familiar with treating progressive keratoconus.

The results described on this site are based on data collected regarding short- and intermediate-term efficacy of treatment. Individual results are not guaranteed and may vary.

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Important Safety Information

Ulcerative keratitis, a potentially serious eye infection, can occur. Your doctor should monitor defects in the outermost corneal layer of the eye for resolution.

The most common ocular side effect is haze. Other ocular side effects include inflammation, fine white lines, dry eye, disruption of surface cells, eye pain, light sensitivity, reduced sharpness of vision, and blurred vision. The risk information provided here is not comprehensive. To learn more, talk to your healthcare provider.

Go to Prescribing Info to obtain the FDA-approved product labeling.

You are encouraged to report all side effects to the FDA. Visit, or call 1-800-FDA-1088.

Approved Uses

Photrexa® Viscous (riboflavin 5’-phosphate in 20% dextran ophthalmic solution) and Photrexa® (riboflavin 5’-phosphate ophthalmic solution) are used with the KXL® System in corneal cross-linking to treat eyes in which the cornea, the clear dome shaped surface that covers the front of the eye, has been weakened from the progression of the disease keratoconus or following refractive surgery, a method for correcting or improving your vision.

Tell your healthcare provider if you are pregnant or plan to become pregnant.