Feature, Soapbox

Standing up for dry eye patients

As a veteran dry eye patient, I have experienced many highs and lows. From feeling temporary relief via expert treatment through to complex psychological trauma from debilitating symptoms.

Dry eye is volatile, difficult to live with and hard to understand. Being young initially complicated the situation as the language is trivial thus explaining the issue to friends, family and co-workers is distressing, adding to the ordeal.

My particular case has been diagnosed in different ways, but common findings include meibomian gland dysfunction, nocturnal lagophthalmos and incomplete blinking. Due to extreme photophobia and ache, aspects of corneal neuropathic pain have also been hypothesised.

I have also been evaluated for demodex blepharitis, ocular rosacea, preservative toxicity and many other pathologies which fluctuate from appointment to appointment. To gauge what’s truly causing a particular sign or symptom is a challenge which makes treatment itself another challenge.

From the outset I received various opinions, attitudes and level of care from practitioners, yet I always felt something was missing, especially after some bad experiences. There were no speciality dry eye clinics per se at the time, and it was not uncommon to be dismissed without concern.

Naturally, I found similar stories amongst fellow patients online, so I decided to create my own website, AusDryEye.com, to raise awareness with the objective of improving the situation for all patients.

After several months and eventually years studying dry eye, communicating with scientists and authorities worldwide, I developed a knack for finding new and innovative information to share, which I still continue today. The website has been well-received internationally and the encouragement from the eyecare community has always been supportive and positive.

The website has evolved and now serves many purposes. I consider it a portal for anyone interested in dry eye, not just patients. I write a newsletter, as well as provide information on clinical trials and industry news.

In addition, I launched a support group three years ago which now has almost 3000 patients. Co-ordinating this includes answering queries, sharing news and moderating the many discussions occurring.

All this experience has in essence led me to become an unofficial ambassador for dry eye, something I am passionate about, as I have represented patients at conferences and travelled to meet experts in the field to gather information. In learning about different approaches and perspectives across continents, I am now able to facilitate productive conversations between practitioners while continuing to share my extensive knowledge as an informal consultant to anyone who needs it.

As a result, part of my website’s consultative activities further extended into promoting medical research and trying to connect individuals or teams with funding sources, either through attracting venture capital or pharmaceutical collaborations. This is a difficult and time-consuming endeavour, but I believe the opportunity is there for dry eye, it’s just not being heard.

Doctors and researchers themselves do not have time to write to thousands of firms with their presentations for funding if they have an idea that can help with dry eye disease. Hence my role, as a patient-advocate, involves introducing new possibilities for technology transfer and drug development or commercialisation through the right channels in my growing professional network
and beyond.

Currently with permission, I am actively participating in the communication of a new therapy being developed in Sydney by Dr Kenneth Ooi and Professor Stephanie Watson, which has significant symptom alleviating capabilities and international market potential. This can be viewed on my website and I welcome any discussions about propelling this which we tenaciously pursue out of compassion for patients and their suffering.

I started my advocacy website almost 10 years ago with a mission that dry eye will be taken more seriously to improve quality of life for those afflicted. It is wonderful to see dramatic improvements since, particularly in Australia where we have excellent practitioners, educators and companies who are willing to invest time, energy and finance into the disease. Without this there would be no advancement.

I hope AusDryEye continues to provide a platform that helps reduce the growing burden of dry eye moving forward.

ABOUT THE AUTHOR:

Name: Zachary de Silva
Qualifications: B.Soc.Sci
Business: AusDryEye
Position: Founder
Years: 9
Location: Melbourne