It is often said that if you want to get something done right, do it yourself. When speaking with Dwayne Collins, a self-taught and internationally renowned ocularist from Australia, it was immediately clear to Megan Webber, Co-Founder of KnowTheGlow, that Dwayne took this axiom to heart when she had the pleasure of speaking with him last week. Dwayne shared that it was his daughter, Liberty, that brought him into the profession and sparked his interest in taking on the challenge of creating prostheses. At seven days of age, Liberty was diagnosed with bi-lateral chorioretinal Colobomas as well as microphthalmia which left her with the need for a prosthetic eye. Dwayne and his wife went through several traumatic experiences trying to get the prosthetic made for their daughter. Not willing to watch his daughter suffer needlessly any longer and not one to back down from any challenge, Dwayne decided that he would attempt to make the prosthesis himself.
As a qualified glazier and working on oil rigs at the time of his daughter’s diagnosis and while he was home between shifts, he would research and look into things he could do for Liberty. He searched video after video on Youtube and found himself watching and rewatching one particular ocularist consistently. As Dwayne told Megan, he “cheekily reached out through Facebook” to the ocularist in Nottingham, UK, John Pacey-Lowrie, whom he had been following on YouTube. John responded quickly and soon invited Dwayne to come to the UK for a short course at Nottingham Trent University. Dwayne accepted and after completing the course stayed to train in John’s clinic for a further six weeks of intensive training with John’s own clients. Upon returning to his hometown of The Gold Coast, Australia and with the enthusiastic support of John Pacey-Lowrie, Dwayne opened his own clinic in Australia (www.oculusprosthetics.com).
Dwayne’s first client was a 2 ½ year old little girl, the same age as his own daughter, Liberty. The family had requested a prosthetic eye for their daughter. Being entrusted with such a responsibility made him nervous but even more focused. Since that first visit the families have remained close friends and the girls have often sat in the clinic side by side for fittings.
At about this time, a very clever journalist had learned about what Dwayne was attempting to do and warranted to follow and film him on his journey to the UK. The footage spanned a six week period and the resulting film was condensed into a five minute mini-documentary called “An Eye Fit for Liberty” on the YouTube Series Search On… which showcases people who have learned how to do something simply by watching YouTube. The video has received 3 1/2 million views (https://youtu.be/3Hj3sFodt7E) to date and we hope it will receive that many more as it’s a wonderful tribute to an extraordinary family.
Dwayne explained to Megan that while his daughter does not have retinoblastoma, he has become very well acquainted with the cancer due to his work as an ocularist. Fifty percent of his clients are RB patients and many of them are from distant countries around the world. He is shocked at the lack of information on retinoblastoma and acknowledges that there is still far too large a gap between detection and diagnosis. Similarly there is far too large a gap between treatment and government support for prosthetics. For those families who do pursue a prosthetic eye there is far too little information available regarding what the journey with the ocularist will even entail. He applauded Megan and KnowTheGlow for the important work they’re doing in helping inform families and professionals as to the signs of the Glow and the diseases and conditions it can indicate and also for informing parents about the resources available to them “after” the glow has been detected and the condition addressed.
Dwyane continues to work with John from the UK and together they have developed a case study to show that an eye prosthesis is not cosmetic and to showcase exactly why it is needed. Together they are trying to show the inverse relationship between forgoing the cost of prosthetic only to then incur the cost of psychological care. For a family or patient that can not afford privately to pay for an eye prosthesis, the government however, is willing to cover the cost with a psychologist for up to 12 sessions on how to deal with eye loss; whereas if the government would simply pay for the making of the prosthesis, Dwayne and other ocularists can turn things around psychologically more efficiently by building their confidence and with an environment that is far less stressful on the child and families.
Additionally, before COVID-19 interrupted our lives, Dwayne was speaking to the Ministry of Health in Australia about the development of a personalized Eye Health Plan. Many clients have no idea why they have to wait between 6-8 weeks before they can be fitted for a prosthesis. He has put all the information into a pamphlet so that they can understand the journey and he wants surgeons to give it to their patients. Now that COVID-19 is behind us he will revisit this issue and hope again to get the program approved along with adequate funding and into the hands of these pediatric surgeons.
In his own practice, Dwayne is careful to give each client one-on-one attention and the time it takes to customize the prostheses. He typically works with only two clients weekly so that he can focus exclusively on each patient. His prostheses are 100% custom-made and personalized by him. From fabrication to fitting, from polishing to stunningly realistic artistry, Dwayne’s intricately involved from start to finish. Clients sit directly with him through the entire process. His own early experiences with his daughter are ever present in his mind and ensuring that his clients are comfortable is of paramount importance during the whole process. His model is a new approach to the world of ocularistry. Dwayne believes that many professional ocularists & surgeons need to put their pride aside and admit when they have missed something. “It is not about being right, It is about doing the right thing.” Dwayne’s clients from all around the globe are fortunate to have this innovative vanguard making their prostheses as his eyes are truly works of art. He helps to give each lucky client much deserved comfort and confidence. KnowTheGlow is honored to share about the amazing work and the committed passion Dwayne Collins is bringing to the people of Brisbane and the Gold Coast of Australia. We look forward to watching him continue to transform the world of ocularistry.