Joana's Story: See With The Heart
By Lyndal Rowlands
Joana was working as a secretary in Dili in 2001, when her friend told her about a young man called Thomas who was totally blind. Joana had studied how to help people who were blind university so she went with her friend to visit Thomas at his house. When she got there she asked him if you knew braille or any other skills to help him live independently.
Joana was sad to find out that Thomas didn’t know how to read braille and she promised to return after work to help him learn. Once Joana started teaching Thomas, other people began to hear about what she was doing.
There were no services available in Timor-Leste for the blind and so many people began to ask Joana for help. She began holding classes under the shade of a big tree in Dili. People bought their children, nieces and nephews to her. Joana began to receive support at home and overseas, including from then President José Ramos Horta.
She started an organisation and decided to call it Fuan Nabilan which means ‘See with the Heart.’ Since 2001, Joana has continued to work to develop the services available to people who are blind or vision impaired in Timor-Leste. This includes Orientation and Mobility training which helps the vision impaired and blind to increase their independence and safety. Between 2001 and 2004, Joana completed two basic introductory courses in Orientation and Mobility led by visiting volunteers from Australia.
In order to learn how to teach Orientation and Mobility Joana desperately needed more training. Volunteer ETEP instructor Bashir teaches Orientation and Mobility instructors at universities in Australia and so he and Sarah began delivering training with the view to also train Timorese trainers. The training has made a big difference for Joana,
“The big difference is that they are teaching us to become teachers, a much higher standard than before, we are learning how to help visually impaired people and how to guide them. Sarah and Bashir encourage us to become professional and to teach others.”
Instructors Sarah and Bashir teach the trainers to use as many of their senses as possible. Including light if they have light sensitivity, touch, the feeling of the breeze, sound and smell.
After completing two years training with ETEP, Joana now teaches Orientation and Mobility to others.
She explains how she teaches somebody how to get around the town centre in Same independently (In 2006 Joana and her family relocated Fuan Nabilan to Same during a period of political unrest and violence). She teaches them how to use landmarks such as the police station, Care international, the school, the ‘loja’ or little shop and Joana's house to help orient themselves.
“You have two or three landmarks and work out if the landmark is on your left or right. At the intersection, you use your ears, then if you hear nothing than you can go."
Joana walks together with the student to the market or to the church. They walk around the town two or three times. They learn and memorise the route and then the last time Joana does not speak and just observes. If they lose their way she waits to see if they can use their new skills to find their way back. If not she goes up to them and says “Stop please come, review and then keep going.”
Joana explains that Fuan Nabilan is well known in Same.
“Usually people are not allowed to touch food at the market, but the market stall holders know about Fuan Nabilan and let the people she teaches, pick up the vegetables to weigh them and smell the fish to make sure it is still fresh.”
“Because many people in Same understand about the blind in Same through Fuan Nabilan, people always ask where are you going, so it is quite safe.”
She smiles, she is so grateful to God, she feels proud, she is happy that whatever she has been taught she has been able to pass it on, she tells them how good they are.
Volunteer instructor Tahir Ali (pictured with Joana) first came to Dili in 2001 & returned in 2013.
Restoring the ‘Sight’ of a Nation
By Erica Darian-Smith and Allister Howie
Rafael De Jesus lives in Letefoho, Ermera, one of the two land-locked districts in Timor Leste and the centre of the country’s coffee harvesting territory. Rafael lives with his wife in a traditional Timorese house in, and is a farmer by trade. Looming over the village is Mount Ramelau, providing shade from the scorching sun and humidity – a welcome relief for the local villagers. Rafael has three sons - one who works with the United Nations as an interpreter in the capital, the other two support their father on the farm. The family grows tropical fruits, particularly bananas, mangoes and mangosteens.
Ermera is three hours away from the national hospital in Dili. The trek from this rural region to central Dili is arduous. The dirt roads are steep, serpentine and stomach churning. Despite these challenging conditions, Rafael De Jesus and his son Juan Guan Gonzalez have made the journey to Dili, as Rafael is now legally blind. Rafael has bilateral senile cataracts. Over the past year there has been a painless, gradual reduction in vision in his right eye. During the last five months visual deterioration has also progressed in his left eye resulting in legal blindness in both eyes. Rafael can only see light in his right eye and has some vision in his left. To put this in context, the definition of legal blindness is a visual acuity of 6/60 or worse with both eyes open
Read more about Rafael here [PDF 608 KB]
Lost Vision in Los Palos
By Erica Darian-Smith and Allister Howie
Meet Guido Perera. He is a seventy-one year old man who lives in Los Palos, Timor-Leste. For the past year his vision has been rapidly deteriorating and for the last six months he has only been able to perceive hand movements in front of his eyes. He is almost completely blind.
Guido used to lead an active life farming vegetables and corn, and acting as the village healer. He can no longer do these things. Guido lives with his son, who helps him with fundamental activities when he is not at work. His son works hours away from their village. When he’s away, the extended family also helps out.
Guido has found the loss of independence hard and is sad that he can no longer help others. Guido has advanced bilateral cataracts. Cataracts are the most common cause of preventable blindness worldwide, however treatment requires access to eye care, facilities and skilled surgeons. This case is one that is all too common in Timor-Leste.
Timor-Leste has a National Eye Centre located in the nation’s capital Dili. It has skilled staff both in the hospital and in outreach teams. However, despite this, many people with preventable eye conditions do not receive timely treatment because of the many barriers to receiving eyecare.
Guido lives 6-7 hours by car from the National Eye Centre. He may never have come in to see a doctor,but fortunately the village was visited by a National Eye Centre outreach screening team three months ago.
Read more about Guido here [PDF 319 KB]
Orlando can see his grandchildren for the very first time
Orlando da Costa Belo has been blind for decades due to very mature cataracts. Undergoing a simple surgery in February 2017, Orlando returned the next day to have his bandages removed and he is all smiles.
Successful cataract surgery performed at the Department of
Ophthalmology in Dili, Timor-Leste has allowed him to return to work and see his grandchildren for the very first time.
We call these sight-restoring operations, ‘Twenty Minute Miracles’. Giving the gift of sight and changing a life can take only twenty minutes with a relatively simple operation.
The East Timor Eye Program is training the next generation of Timorese Ophthalmologists to perform these miracles.
A nurse translates, “He says it was the Portuguese time when he remembers seeing”, referring to the Portuguese colonisation of Timor-Leste, which ended in 1975.
At 65, Orlando had been unable to work or care for his six children and four grandchildren residing in Baucau. Now, not only will he see his grandkids for the first time he says he will be able to return to his livelihood of farming.
Baby Aldo, a premature baby is at risk of blindness
The East Timor Eye Program’s Founder, Dr Nitin Verma fashions a makeshift tool for holding open eyelids out of the looped ends of a paper clip, sterilises it and very gently uses it to inspect baby Aldo’s eyes. For moments, Baby Aldo’s concerned parents watch on with worry.
Dr Verma looks up and gives two thumbs up to the young parents. Relieved, Aldo’s parents Agus Linu dos Santos and Luisa Lilman Alves leave the Hospital with baby Aldo, who was at high risk of developing blindness before being seen by the eye team.
This year, the East Timor Eye Program are training budding Timorese ophthalmologists in paediatric ophthalmology and diseases such as retinopathy of prematurity, a disease that occurs in premature babies. Timor-Leste has high rates of paediatric health issues with one in 12 children dying before the age of five from poor neonatal health and preventable diseases and these skills are essential to ensure the best start to life for these babies.
Dr Frenky is one step closer to becoming a Master of eye health
Post Graduate Diploma of Ophthalmology (PGDO) Trainee,
Dr Frenky de Jesus completed and passed final examinations in June 2017 and is one step closer to his goal, to undertake a Masters of Medicine in Ophthalmology. His professional development pathway is supported by the East Timor Eye Program.
Dr Frenky said “We have one mission - to give better health to the population, to decrease the morbidity and mortality.”
“We know here we have a limited source of ophthalmologists compared with the number of patients with eye disease, so I think I can help those people who have eye problems and also increase the number of ophthalmologists in Timor.”
Dr Frenky said he was inspired to be a doctor to help the people of Timor-Leste. “We have a limit of doctors here and I want to help my people and give better health to all the people”.
Dr Julia’s sacrifice for her young children and country
Dr Julia Magno wanted to become a doctor since she was a young girl, now she is completing her training to become a fully qualified ophthalmologist – one of the first generation of Timorese Ophthalmologists who will help ensure sight for this precious young nation.
In July 2017, Dr Julia began her long-awaited Masters of Medicine in Ophthalmology. “To leave my husband and children and also my parents for three years is not an easy decision for me and there are lots of things to consider. But they, especially my husband support me to continue my study and I feel like I am not alone, I am prepared to go and feel so happy now with this great opportunity from RACS.”
Dr Julia hopes that after completion, she will return to Timor-Leste and will be more active, through case studies, outreach and research to upgrade and strengthen eye care service quality in the country.
Thinking towards to future, Dr Julia says "I will do my best to accomplish this training program to show that I value this opportunity, I hope this will not end for me but continue to provide to those who will come after me."
Podcast: Determination, vision and the gift of sight to Timor Leste - Dr Nitin Verma
For the past 16 years, leading Hobart ophthalmologist Dr Nitin Verma has taken his skills, passion and determination to Timor Leste to combat the serious issue of eye disease in that poverty-stricken nation. In the process he and his team of volunteers have transformed the lives of thousands. Dr Verma discusses the development of his East Timor Eye Program since its small beginnings in the year 2000.
Podcast can be accessed at:
Dr Susani Sarmento
One of the most common eye problems in Timor-Leste are cataracts. Although cataracts are treatable – they remain one of the main causes of significant vision loss or blindness in middle and low-income countries. The loss of sight can have a debilitating effect on daily life for individuals, the consequences are intergenerational and amount to many lost opportunities.
The East Timor Eye Program, managed by the RACS Global Health is committed to strengthening the national health care capacity.
One of our Post Graduate Diploma of Ophthalmology Trainees, Dr Susani Sarmento, recently completed cataract surgery training in Nepal.
Dr Sarmento successfully completed her training in November and can now perform small incision cataract surgery independently.
This training will help to address the current backlog of untreated cataract cases in Timor-Leste.
Dr Susani Sarmento’s training was generously supported by St Johns Ambulance Western Australia.
East Timor Eye Program treats glaucoma with Molteno3® implants
Tasmanian ophthalmologist, Associate Professor Nitin Verma, founded the East Timor Eye Program in 2000 when East Timor (Timor Leste) attained independence after a devastating war. The initial aim was to bring eye care from overseas to more than a million East Timorese who were without eye care services, now the focus is on training East Timorese eye care professionals so that the country itself has the resources to eradicate preventable blindness by 2025.
On his most recent trip to the National Eye Centre in Dili, Assoc Prof Verma and senior registrar Dr Valerio Andrade treated patients with severe glaucoma by implanting Molteno3 SS-185 glaucoma implants. The Molteno3 SS-185 is the most versatile glaucoma implant and "incredibly easy to use".
MOLTENO Ophthalmic is delighted to support the work of the East Timor Eye Program and is grateful to Designs for Vision, who distribute MOLTENO implants in Australia, for arranging the donation.
For more information about MOLTENO, please visit their website: