By Published On: 27 October 20214.7 min read

My keratoconus story began when I was a very young girl. I was living in the Central West of New South Wales. It was before the days of television, when my family would go to the movies.

That was one of my favourite things. In fact I became fascinated with the beautiful gowns worn by the ladies on the screen. I spent much time drawing my own designs and I liked to sew clothes for my doll with whatever scraps of fabric I could get my hands on.

One day a sewing machine arrived

From where our home was located one could see the bus stop. In the afternoons I would watch for my brother to get off he bus after work. One day I saw him struggling to carry what seemed a heavy object. It turned out to be an electric sewing machine.

I certainly put that sewing machine to good use. In fact it helped me decide to learn how to make beautiful gowns, like those I had seen in the movies.

I told my dad of my great desire and he promised he would get me all the help I needed. In fact, on my last day of school my dad took me aside and told me he had looked into sending me to college in Sydney to learn dress design and sewing.

I was in the second year of my course when I came home for end of term holidays. One evening I was sitting with the family in the lounge room doing some hand sewing. My father noticed how very close I had to hold my work so that I could see what I was doing. He expressed his concern about my eyesight and made the decision to send me to have my eyes tested.

The day my world fell apart

The day of my appointment arrived and after the tests the optometrists sat quietly for what seemed a very long time. Finally he shook his head whilst he explained that I would be almost (if not totally) blind before I turned thirty.

My world fell apart that day, or so I thought. I struggled with my dress making course until I knew it was no use continuing. By now I thought keratoconus would stop my design and sewing.  So I came home to be close to my eye doctor who was, by now, changing my script often.

Thankfully, I got a job as a window-dresser in a local department store. I held this job for some years, but my eyesight was getting worse. One day I went to my family pharmacy to get some eye drops and whilst discussing it with the pharmacist he offered me a job. I started almost immediately! It was a fantastic job. In fact, while working there I met and married my husband with whom I had two children.

A new beginning

I continued to see my local optometrist and I shall always remember one particular visit. He told me there may be someone who could help – if I was prepared to go to Sydney. I said yes without hesitation.

I arrived in Sydney to meet with Dr. Dean-Butcher for the firs time. It was 1977. He was quite shocked at the state of my eyesight and was eager to help. Indeed, he told me I had keratoconus – something I didn’t know. He also told me about corneal transplants. It wasn’t long before I began the process and had two corneal grafts, one in each eye.

The results were amazing and almost immediate. I was seeing things in detail. For example I could see leaves on trees and watch television. I could also see faces I had not seen in detail for a very long time.

About a year after having my left eye done it became harder to see. In fact, my cornea was becoming opaque. Dr. Dean-Butcher explained that my body was rejecting the cornea and that I should have the surgery done again, which I did.

Keratoconus, dress designs and sewing

When Dr. Dean-Butcher retired I began seeing a certain Dr. Michael Lawless. Thanks to regular visits with him I began working on my beautiful gowns once more. Keratoconus didn’t stop my sewing and design.

While under the care of Dr. Lawless he detected I astigmatism. I had a delicate operation to correct it. Dr. Lawless also removed a cataract and inserted a lens in my right eye. He and Dr. Dean-Butcher will always have my gratitude. Dr. Lawless introduced me to Dr. Jim Kokkinakis.

Dr. Kokkinakis allows me to call him Jim. When I first met Jim he suggested we try contact lenses. I was rather a difficult patient, but his patience was so enduring. As it turned out I was unable to wear the contact lenses without a lot of discomfort. Nonetheless, Jim’s expertise in keratoconus was amazing and it is due to his knowledge and care that I have been able to fulfill my dream of making beautiful gowns for people. I even had the pleasure of making an outfit for a lady from New Zealand to wear to a Military Function in Paris!

Jim has been caring for me for over twenty years and if it weren’t for him I know I would be in a world of darkness. I will always be grateful that he came into my life.

Today, I am in my mid seventies and I am still able to drive – and not on a restricted licence. What’s more, in spite of keratoconus I still enjoy the design and sewing of beautiful clothes!

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