By: Steven Hooper

I was only 10 years old when I was diagnosed with keratoconus 25 years ago. I remember one of the first things doctors told me was that I would need to wear contact lenses. My first lens fitting was a mixture of discomfort – due to the hard lens – and amazement at how bad my vision had gotten. Don’t get discouraged if your first lens fitting goes this way – it should get better! Sometimes it takes several visits to find the right fit for you.

Finding the Right Contact Lens Fit

After my diagnosis, I was referred to a contact lens specialist in the hopes of finding a pair of lenses that would fit my warped cornea. Because keratoconus causes thinning and bulging of the cornea, normal lenses would not fit properly. I needed to find a better solution for my unique condition. Luckily, my eye doctor was familiar with fitting patients with contact lenses for keratoconus and has been with me now throughout my 25-year journey.

Initially the Rigid Gas Permeable (RGP) lenses, which are rigid lenses made of durable plastic that can transmit oxygen, were my only option, since my keratoconus was too severe for soft, traditional non-specialty lenses. One of the biggest challenges I faced, like many people with keratoconus, was how uncomfortable the RGP lenses were. Beyond discomfort, they made it incredibly difficult to participate in certain activities and play the sports that I love.

Eventually, one of my corneas became so bad that I needed a corneal transplant to preserve my vision, which was a hard but necessary choice. After I recovered from surgery, my eye doctor and I began to look at other lens options. I found that piggybacking (the process of “layering” one contact lens on top of another) my RGPs over soft lenses worked well in my non-transplanted eye, due to the discomfort I felt with the RGPs. However, using soft lenses on my treated eye provided near 20:20 vision, which was a dream come true.

Daily Management of Contact Lenses for Keratoconus

Growing up, I carried around a small mirror, contact solution, and my lens case, no matter where I was going. Being a teenage boy who had to carry a mirror around school was not cool. Combined with my hay fever– which would cause my lenses to dry out and feel gritty– it was hard to find comfort. Eye drops quickly became a lifesaver and eventually my symptoms weren’t as bad. These days I rarely struggle with dryness, but if I do, I make sure to use re-wetting drops.

These days, putting in my contact lenses is simply a part of my daily routine, and I no longer see it as a hassle. After years of experience, I’ve become so used to wearing them that the biggest challenge is making sure I have enough time in the morning to put them in before work.

Over the years, I have lost and damaged many lenses, although to this day I have yet to tear a soft lens! Since the lenses can be expensive, I tend to keep spares at home in the case of an emergency.

Lending a Helpful Hand

Finding a pair of properly fitting contact lenses for keratoconus can be a long process, as can learning how to manage them daily. Although everyone is different, here are some tips that I have learned along the way:

  1. Contact Care:
    • This may seem obvious but always wash your hands and don’t rush.
    • Always make sure to find a clean, dust-free place to sort your lenses.
    • Having little pocket mirror with LED lights around the edge is a lifesaver when trying to sort different lenses in a low light environment.
  2. Be Patient: Speak with your physician about what keratoconus treatment options are available to you to find a solution that works best.

Steven Hooper works as a production manager (office furniture) and is also an actor. He lives in Burnley, a market town in Lancashire, England.