VISION Care

Looking back on 2018

By Standing Voice

October 3^rd, 2018

My vision stops me from performing as well as others. It is my dream to finish university, but if I’m not at the front of the class, I can’t see the board and it’s nearly impossible to learn. Elisha Martin (student with albinism)

The Standing Voice Vision Programme was established in 2014 to break the damaging cycle of poor eyesight and poor learning afflicting so many children with albinism in Tanzania. Since then, the programme has grown in the breadth of its reach and depth of its impact, serving children and adults with albinism across Tanzania to enhance their quality of life and mitigate the effect of visual impairment on their educational and professional performance.

2018 has been an exciting period of expansion for the programme, which is now reaching over 2,200 people with albinism across 8 regions of Tanzania. Clinics provide each patient with specialist low vision examination, assistive devices prescribed to meet their specific vision needs (including monocular telescopes and prescription glasses), and education in the management of low vision and use of these devices. We have also trained a network of 105 teachers as Vision Ambassadors tasked with monitoring and promoting the welfare of children with albinism in schools.

In February, Standing Voice held a three-day workshop in Mwanza, Tanzania, where nine optometrists were trained in the unique visual impairment and vision needs of people with albinism. The workshop was delivered by Dr Rebecca Kammer, the clinical director of our programme and a world-leading expert in albinism and vision. Participants observed presentations in vision function and low vision exams, using their newly acquired knowledge to take part in role-play exams before delivering low vision care to 50 students at Mkolani and Lake View Schools. Our existing Vision Programme optometrists were also asked to nominate and commit to mentoring a new optometrist in the care of patients with albinism. In attendance was Nigerian optometrist Dr. Edi Onyinye, who expressed an interest in the Standing Voice Vision Programme as a model of best practice and hopes to replicate such a programme in Nigeria.

In the week following this workshop, the Standing Voice team travelled to Shinyanga to deliver a vision clinic to 322 patients, where two of the newly trained optometrists were formally inducted into the Programme. Over three days, we dispensed 176 prescription glasses, 308 pairs of sunglasses and 241 monoculars.

This was followed in May by another vision clinic in Dodoma. The event combined albinism education, optometry services, teacher training and the provision of assistive vision devices. 171 patients were treated, and 24 teachers were trained as specialist ambassadors for students with albinism in their schools.

Through working with Standing Voice, I have received training on how to treat full refractive errors using a retinal scope and how to prescribe telescopes: these skills are instrumental to treating people with albinism. Dr Daniel Ringo (optometrist)

Optical aids for people with albinism are very expensive and often unavailable. It’s only with the help of NGOs like Standing Voice that we are able to provide the necessary instruments and deliver them at the appropriate time. Dr Abdi Nyembo (optometrist)

I have been a teacher for 15 years. After today’s training, I understand why children with albinism should be put at the front of the class and given extra help reading exercise books. I have also learnt about how to support pupils with the use of a monocular. This knowledge will help my pupils with albinism to get the most out of the classroom. Here Nzali (teacher)

Throughout this year, we have worked closely with Dr Kammer and a number of other actors—Tanzanian optometrists and teachers; the universities of Lancaster, Coventry and Worcester in the UK; and people with albinism and their families—to develop a teachers’ information booklet on albinism and vision. The booklet is designed to help all teachers, not just those trained as Vision Ambassadors, and contains vital information about the genetic origins of albinism, as well as best practices for managing low vision and UV exposure for students. The booklet also contains a number of recommendations by head-teachers as well as a matrix of common vision exercises to be tested by students in classroom settings. After initial distribution of 100 copies across ten schools, the booklet will be ready for wider dissemination in 2019.