Allison's Journey with Keratoconus, Contact Lenses and Driving.

It was inevitable that I would end up wearing glasses... both my parents wore them, all four of my grandparents and most of my aunts and uncles as well. I got my first pair of glasses when I was in fourth grade, but only for seeing the blackboard, watching TV and other activities that required distance vision. This was the case for another few years, until I needed to wear my glasses to read by the end of 7th grade. I got my first pair of contact lenses after 9th grade, as I was active in dance and theater, and dancing with my glasses on wasn't going so well.

I wasn't going to let keratoconus stop me from getting my license.

The next spring, like any other just-turned-16-year-old I was excited to get my learner's permit. After taking driver's ed that summer and beginning road lessons, I failed my first road test. I didn't even make it out of the parking space, because, as the police officer giving the test said, I "backed up crooked." That made me not want to drive again for another year or so.

Almost a year later, my 18th birthday was quickly approaching and college was just around the corner, so I decided that the time to get my license was here and nothing was going to stop me... until I went for my yearly eye exam a few weeks later as I had run out of contact lenses. I underwent all the normal tests at the optometrist's office, and a few minutes later she brought my mother in the room and sat us both down. She said that she suspected I had a disease called keratoconus, that it was fairly rare, and she had only seen one other case in her many years of practicing — and that was her own brother! She then sent me to a nearby ophthalmologist for a second opinion.

The ophthalmologist was pretty certain that he could confirm my optometrist's diagnosis, but just to be safe, he sent me up to Massachusetts Eye and Ear Infirmary in Boston. I am so fortunate to live within an hour's drive of some of the best hospitals in the world, and those hospitals have made huge differences in the lives of my family, friends and myself. We couldn't get an appointment at Mass Eye for another few weeks, but when the day came I saw the ophthalmologist, who confirmed my diagnosis, and the optometrist, who would be fitting me with my RGP lenses.

Those first two appointments were terrifying, but one of the wonderful child life specialists at the hospital walked me through everything and stayed by my side the entire day. My ophthalmologist, who I continued to see up to three times each year until she relocated last year, explained that while my left eye was in the early stages of keratoconus, my right eye was already pretty advanced. She wasn't sure how quickly the disease could progress, but warned me that it could happen.

The next few months before I left for college (four hours away in another state) were crazy with contact fittings, lost lenses, and re-fittings. I was also told by my two doctors that I couldn't drive until my lenses were correctly fitted and the prescription was right. The following summer, after my freshman year of college, I came home, had my eye exams, and was given the OK to start driving again. I signed up for more road lessons (with a different driving school), as I was still a bit timid behind the wheel, and took the test in August... twice. The first time, I failed by backing up too far on my three-point turn (but I didn't hit the curb) and the second, I was too close to the curb when I stopped on the side of a hill (again, didn't hit the curb). I had the same test administrator both times, and I think she remembered me the second time, as it was only two weeks after the first. I was disappointed, but had to go back to school in the fall.

The only time I ever have an issue with my lenses is when my allergies are acting up, but it's really only a minor inconvenience most of the time.

The following summer, I tried again. This time with a driving school that specializes in nervous drivers. The instructor was kind, but unfortunately, I couldn't schedule a test before I went back to school in the fall. I was able to schedule a test the day before Thanksgiving. I left school a day early, hopped on the train and was up bright and early for a refresher road lesson. We pull into the registry, and who comes walking up to the car? The same test administrator. I was convinced I was doomed. However, being the first road test of the day and with only one or two minor mistakes, I passed. It took a few extra years, but I wasn't going to let keratoconus stop me from getting my license.

In the years that followed, I graduated from college in 2011 with a degree in journalism, worked at a newspaper back in my hometown for a few years, and will be starting graduate school in the fall to be licensed as a high school English teacher. This career change has been a bit of a bump in the road, along with some other medical issues unrelated to my keratoconus. Speaking of the keratoconus, my progression has been fairly mild, and seems to have last progressed in both eyes when I was about 25 or so. My prescription continues to change, of course, but with my family history that is inevitable. Both my original doctors at Mass Eye have moved on, but I have two excellent new doctors (well, one I have been seeing for a few years now) that have taken over my care.

I manage very well with RGP lenses with a piggyback in my right eye. That first year was tough with the comfort of the lenses (and I was constantly losing them... my three freshman roommates and I were often on the floor of our bathroom searching for one of my lenses!) and my optometrist suggested I switch from the Boston cleaner/solution to Clear Care and a saline rinse. I have been using that combination (plus the Boston cleaner/saline that stays in my purse) for about 8 years now, and it works like a charm. I may have to carry an extra cosmetic bag with me at all times, which sometimes makes it hard to travel light, but I have learned to take it in stride and always carry a purse! The only time I ever have an issue with my lenses is when my allergies are acting up, but it's really only a minor inconvenience most of the time.

1 comment:

  1. Is she not aware of crosslinking???? Have they offered it yet to her? Sometimes due to pachymetry restrictions, I can understand that it is not offered but X-linking wirks in younger people better as after 35 usually the cornes stabilizes itself due to natural strengthening of the stromal lamellae of the cornea.
    Keratoconus is not that rare at all. We see so many of keratoconus patients in the UK and I have also worked in Crete (Greece) that there us a very high percentage of diagnosed keratoconic.
    It is a genetic condition that usually skips a generation. She needs to look at grandparents history both sides.

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