Inherited eyes: My story of glaucoma, genetics, and embracing life.
By Sahra Ahmed, Pegasus Health Refugee Health Clinical Lead
According to Glaucoma New Zealand (Glaucoma NZ), glaucoma is the leading cause of preventable blindness in New Zealand and the second leading cause of blindness globally (World Health Organisation).
Glaucoma is a chronic, progressive, and irreversible eye disease caused by damage to the optic nerve due to increased intraocular pressure (IOP). If untreated, it can lead to visual field loss, causing significant disturbance and undesirable outcomes (John Hopkins Medicine).
Diagnosis and Initial Reactions.
I was diagnosed with Primary Open-Angle Glaucoma (POAG) with a pretreatment intraocular pressure of 23mm Hg in both eyes. As a nurse, I knew about glaucoma but had not paid much attention to it. I associated it with much older adults. Receiving the diagnosis was life-changing, bringing a mix of emotions—shock, fear, and eventual acceptance.
Early last year, I went for my regular eye check which was overdue because of COVID and the general busyness of life. I scheduled an appointment with a new optometrist instead of my usual mall-based chain optometrists. This decision proved to be one of the best and most timely choices I ever made. The optometrist conducted a thorough examination and urgently referred me to an eye specialist.
Looking back, I had some warning signs—blurriness in my peripheral vision and occasional intense eye pain—but I dismissed them as part of the natural ageing process. I also had misplaced confidence that routine check-ups would detect any issues early. Unfortunately, despite my family history of glaucoma, I was not recalled for a follow-up as recommended, leading to a delayed diagnosis.
Familial and Genetic Aspects.
The familial aspect of POAG has been acknowledged for many years. Studies suggest that up to 50% of POAG patients have a family history of the condition (Tielsch et al., 1994). In a population-based study in the Netherlands, first-degree relatives of affected individuals had a 22% risk of developing the condition.
My family history includes multiple cases of blindness due to glaucoma. My maternal grandmother, her son, her sister, and her brother all lost their eyesight due to late diagnosis and lack of access to timely healthcare. In my home country of Somalia, studies have shown an increasing prevalence of POAG with age, with rates rising from 6.8% among 50-60-year-olds to 12.3% among those aged 80-90.
Emotional and Practical Adjustments.
Initially, I was devastated. I feared losing my independence and struggled to find adequate support to navigate my diagnosis. However, I chose to be pragmatic and take control of my health. I researched treatments, sought specialist advice, and made lifestyle adjustments, such as reducing caffeine intake and avoiding activities that strain my eyes.
Following my diagnosis, I became acutely aware of how integral sight is to our identity and wellbeing. I also noticed the many ways language incorporates vision metaphors, such as “I see your point” or “blind as a bat.” My native language, Somali, also uses sight as a powerful metaphor for love and trust, reinforcing the deep connection between vision and human experience.
In Somali someone may say “walaahi indhahayga waan kaa jecellahay” which means I swear to God, I love you more than my eyes not only in a romantic way, but to say you mean a lot to me.
Another Somali way of saying is” Indhaha Allah iga tuuro hadaan been kuu sheego” which translates as “may Allah take away my sight if I lie to you.”
Social and Economic Impact.
Vision impairment significantly affects quality of life, employment opportunities, and mental health. Studies indicate that adults with vision loss experience higher rates of depression, anxiety, and unemployment. Older adults with vision impairment are at increased risk of social isolation, falls, and early entry into care facilities. (World Health Organization (WHO))
Globally, vision impairment carries an enormous financial burden, with an estimated annual productivity loss of USD 411 billion (WHO). In New Zealand, vision loss costs an estimated NZD 3.74 billion per year, and this burden is expected to grow as the population increases (Eye Health Aotearoa).
Barriers to Accessing Care.
“Timely and equitable access to eye healthcare services for all New Zealand residents, regardless of postcode, ethnicity or income, to eliminate avoidable blindness.”
- The Royal Australian and New Zealand College of Ophthalmologist (RANZCO)
As a health professional and someone who advocates for equity and accessibility of services of all sorts every day, it is the first time I had some understanding of what it is like to have a disability, including hidden disability—seeing my visually impaired colleague navigating in and around the office and the challenges he faced. I have noticed that pavements are often uneven, doors are hard to open, and people drive so close to the edge of the traffic light. I have noticed more visually impaired people than ever; they are everywhere, trying to cross the roads and move around in their typical day, and I thought that would be me soon!
Despite living in a developed country, access to timely and affordable eye care remains a challenge. Private specialist consultations cost between $600 and $1,000, making them inaccessible to many. Public healthcare delays and a shortage of ophthalmologists further exacerbate inequities in access.
I do not have health insurance like many people in New Zealand, and I am not sure how long I can sustain the cost of seeing a specialist every four to six months, which ranges from $600-$1000 just for follow-ups.
Private health insurance has limitations, such as exclusions, co-payments, or limited coverage. This can create a situation where people must come up with extra money to cover the cost, and if they cannot, the disease progresses faster, resulting in loss of vision.
Additional barriers include language difficulties for migrants and former refugees, lack of awareness about glaucoma, and geographical challenges faced by rural populations. Māori and Pasifika communities are underrepresented in glaucoma, diagnoses, possibly due to systemic barriers to healthcare access. (RANZCO)
Looking Ahead.
I underwent Selective Laser Trabeculoplasty (SLT), a laser treatment to reduce eye pressure, which was successful. I am relieved to have delayed the need for lifelong eye drops, though I remain vigilant about my condition.
We need increased public education and awareness of glaucoma. Healthcare professionals should receive more training, and targeted screening should be provided for at-risk populations. Resources available in different languages would ensure that non-English speakers have access to essential information.
I firmly believe that healthcare is a human right. New Zealand must strive for universal, accessible, and equitable eye care to prevent avoidable blindness and improve outcomes for all residents, regardless of socioeconomic status.
By sharing my journey, I hope to raise awareness about glaucoma and encourage others to prioritise their eye health. Early detection and treatment are key to preserving vision, and no one should have to navigate this journey alone.
References:
Royal Australian and New Zealand College of Ophthalmologists (RANZCO). (2023). NZ Vision 2030. https://ranzco.edu/wp-content/uploads/2023/05/NZ-Vision-2030_FINAL.pdf
Glaucoma Research Foundation. (n.d.). Home. Glaucoma Research Foundation. Retrieved February 18, 2025, from https://glaucoma.org
Susanna Jr, R., De Moraes, C. G., Cioffi, G. A., & Ritch, R. (2015). Why do people (still) go blind from glaucoma? Translational Vision Science & Technology, 4(2), 1. https://doi.org/10.1167/tvst.4.2.1
World Health Organization. (n.d.). Blindness and vision impairment. World Health Organization. https://www.who.int/health-topics/blindness-and-vision
Eye Health Aotearoa. (2023). Draft action plan for eye health in Aotearoa New Zealand. Eye Health Aotearoa. https://www.eyehealthaotearoa.org.nz/draft-action-plan-2023
Rapata, M., Cunningham, W., Harwood, M., & Niederer, R. (2023). Te hauora karu o te iwi Māori: A comprehensive review of Māori eye health in Aotearoa/New Zealand. Clinical & Experimental Ophthalmology, 51(7), 714-727. https://doi.org/10.1111/ceo.14279
Kalayci, M., Cetinkaya, E., & Erol, M. K. (2021). Prevalence of primary open-angle glaucoma in a Somalia population. International Ophthalmology, 41(2), 581-586. https://doi.org/10.1007/s10792-020-01612-0