The Association's primary function is to offer support for people with keratoconus and their families. Providing information about an issue is always a good start. But even better is to talk with people about their experiences. Each person has a different story to tell about his or her life with keratoconus - and while they may resemble, we all have something to learn from others.
About 10% of our support work involves outreach. This predominantly relates to surgical procedures. In the past, this concerned mainly corneal transplant patients wishing to speak to others about the operation and post-operation care and recovery. Since the widespread introduction of corneal collagen crosslinking, the Association has been fielding more calls from people considering corneal collagen crosslinking and who want to know more about the procedure and whether it has been working for others.
Many parents of adolescents want to speak to other parents to see how they have handled the difficult time after these surgeries and to find out more information about how their child has coped with school, sport and social activities after having crosslinking or a transplant.
Many adults too want to know how things will be after crosslinking or a graft and how it can affect employment and family life.
Contact lenses - mainly rigid gas permeables lenses - remain the primary tool for correcting vision loss due to keratoconus and many people also want to know from others how they cope with wearing these plastic marvels long term. Questions may cover cleaning, insertion, removal or finding them when they are lost. Again, we all have extensive experience with contact lenses that we can share with newbies.
A number of individuals and families have been wonderful in helping with this outreach over many years now and we thank them for their ongoing involvement.
The outreach work done by Keratoconus Australia members is greatly appreciated by the Association and those they assist - as evidenced by the many thank you letters we receive saying what a difference it made to them.
If you would like to contact someone to discuss the impact of the treatments you are being offered or for advice on coping strategies or any other aspect of living with keratoconus, please contact us now.