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KERATOCONUS – MAX’S STORY

Posted in External Events, Health, and Inspiring Stories

If it wasn’t for the screening process, we might not have caught it at such an early stage…

Max Nyenkamp’s parents, Karen and Robert own an Auckland based wholesaler that supplies optical equipment to optometrists and hospitals. They have always supported the Special Olympics Healthy Athletes Programme (HAPs) Opening Eyes by donating the equipment they use for free eye assessments during the National Games.

In 2017, at the Wellington Games, athletes with Down syndrome (DS) were screened for keratoconus by Auckland University researchers with the following equipment supplied by the Nyenkamp family:

  • a corneal topographer
  • auto-refractor
  • biomicroscope

The screening specialist team from The University of Auckland were Dr Akilesh Gokul, Dr Samantha Simkin and Joyce Mathan.

What is keratoconus?

In keratoconus, the cornea becomes shaped like the point of a rugby ball rather than the normal soccer ball shape. Over time, this can make it more difficult to see clearly. Studies in other countries have shown that keratoconus may occur more often in people with Down syndrome. Early treatment is available that may slow or stop the progress of keratoconus.

What did the researchers find through their screening?

The screening during the Games detected keratoconus, or sub-clinical keratoconus, in 45 athletes. Many of the athletes showed quite advanced states in one eye and mild or sub-clinical status in the other eye.

Max was screened for the disease at these games and did not show any symptoms. One year later, another screening was held at the 2018 Special Olympics Basketball Ribbon Day at Pullman Park, Papakura. Max was screened again at this event and this time he did show signs of keratoconus.

What treatment did Max receive?

Karen and Robert contacted Dr Rasha Altaie at the Milford Eye Clinic immediately to discuss Max’s results. She arranged for him to have Corneal Collagen Crosslinking (CXL), a procedure that is used to strengthen the cornea. It is primarily used to halt the progression of keratoconus but is also used for the treatment of other indications. CXL of the cornea involves applying riboflavin (vitamin) eye drops and then exposing the cornea to ultraviolet light. The procedure takes about 45 minutes and is proven to help reduce astigmatism, improve best-corrected visual acuity (BCVA) and maximum simulated keratometry values reducing myopia to a variable degree.

As you can imagine, this procedure would be very difficult for Max without him going under general anaesthesia. So the Nyenkamps took him to the Manukau SuperClinic in January where Dr Altaie performed the procedure. Max goes for check-ups three times a month and so far, it is looking good.

“If it wasn’t for the screening process, we might not have caught it at such an early stage as most optometrists do not have the equipment necessary to check for keratoconus. Max would have had to have a more invasive procedure and if it was left too late a total cornea replacement (transplant) would be necessary or blindness occurs.”

Karen Nyenkamp

How can I or my family member join the Keratoconus study?

This year the research team launched a large, first in New Zealand study to better understand how common keratoconus is in people with DS, its nature of progression and the outcomes of CXL for those that require it.

KERATOCONUS STUDY PROGRAMME – OPEN NOW

This study is open to people with Down syndrome who are at least 10 years of age – there is no upper age limit. The full assessment takes one and a half to two hours. If your child will turn 10 by February 2020, email the researchers and they can arrange an appointment for after their birthday. Appointments are held at The University of Auckland Grafton Campus.

Click on the link below to email joyce.mathan@auckland.ac.nz if you and your support person want to learn more about participating in this study.