Living with Ocular Albinism is a lifelong handicap that limits your experience of the world to blurry and distorted images.
According to a statistical finding, Ocular Albinism affects 1 male in 20,000 births.
For the people who are affected by this low vision condition, seeing the world through the lens of Ocular Albinism is restricting as much as it is frustrating.
No individual would willingly put themselves through this ordeal – but, can a person do something to prevent it from occurring in the first place? Yes.
Ocular Albinism is a genetic disease, so if you, or a close relative has it then seeking preventive treatment can be invaluable in protecting your children from inheriting the disease-causing gene pair.
Prevalence of Ocular Albinism
The different types of Albinism can affect people of all ethnic backgrounds. The frequency of its occurrence varies across different populations, but it has been found that it is most common in people of sub-Saharan African descent.
Across the globe, Albinism is estimated to affect one in 17,000 people.
Ocular albinism, a type of Albinism has further 3 sub-types, these are OA1, OA2, and OASD respectively. The most common form of this disorder, Ocular Albinism type 1, also known as Nettleship-Falls affects at least 1 in 60,000 males. The other types occur very rarely.
The incidence of Nettleship-Falls albinism is likely to be more prevalent due to frequent misdiagnosis.
Ocular Albinism is an X-linked disease, meaning that it is transmitted through a gene mutation present on the X-chromosome. A mother who carries one mutated X gene can pass it on to her son. This type of inheritance is also known as X-linked recessive inheritance.
As it is an X-linked condition, it almost always affects males. Very rarely, a woman carrying the mutated gene may also exhibit symptoms.
By taking appropriate measures, Ocular Albinism can be prevented from being passed down to later generations.
However, once you are affected with this low vision disease, there are specific treatment options that may improve your sight, but cannot cure the visual problems completely.
Before we explore the ‘how’ of prevention, let’s see which group of people is most vulnerable to Ocular Albinism, and its occurrence across people of different ethnicities.
Effects of Ocular Albinism on Mental Health
Lifestyle Changes
Being born with a low vision condition comes with several limitations. Given that a person can only see a restricted view of the world around him/her at all times, it renders them unable to carry out routine tasks on their own.
The very core problem for such people is a lack of independence. Simple daily life things such as going out for groceries, fending food from the kitchen, self-grooming activities, reading instructions on a product, and other entertainment, become increasingly difficult with reduced sight.
To cater to these, family members often have to come for assistance.
Also, a research conducted in Australia showed that vision impairment is associated with a higher risk of accidental falls and hip fractures. And people with low vision are in greater need of community services and have a greater risk of admission to nursing homes.
Social Exclusion
A study that explored the association of visual impairment with the feeling of loneliness suggested that it is common among visually impaired people. There is a prevalence of about 28.7% and 19.7% of moderate and severe loneliness respectively.
These statistics are significantly higher for visually impaired people in comparison to the general population, and it is easy to predict why it happens.
For people with Ocular Albinism, lifestyle changes such as reduced outdoor activities and fewer job prospects limit social interaction and thus cultivate feelings of alienation from other people, and loneliness.
Visual Impairment and a Negative Self-Concept
Adjusting to a dependent pattern of life is exhausting. Apart from being a mere inconvenience, it also lowers self-esteem and negatively affects the way they see their person (self-concept).
Several factors play a role in this, such as the degree of independence in mobility, parenting style, social support, and friendship. A strong social network and positive parenting strategies may help ensure that children with Ocular albinism grow up into adults who have a good self-concept and enhanced self-esteem.
Preventive Treatments for Ocular Albinism
As discussed earlier Ocular Albinism is a genetic condition so there is yet no cure for it.
However, people who have a family history of Albinism can benefit from genetic counseling to assess the risks of passing it down to their children.
Genetic Counseling is currently being practiced for Ocular Albinism. It equips you with information about how genetic conditions might affect you and your family. Usually, your healthcare provider or the genetic counselor first collects your personal and family health history. Based on that, it is determined if you may be carrying the mutated gene for Ocular Albinism, and also whether or not your children may be at a risk of inheriting this condition.
If you have a previous family history of Albinism, genetic counselling is one such preventive procedure that you can adopt in order to ensure that you do not pass down this lifelong condition of visual impairment to your future generations.
Management of Ocular Albinism
The management options for Ocular Albinism are a selective few. Its different symptoms are dealt with using various techniques. For instance, ophthalmologists usually suggest eye muscle surgery or vision therapy for crossed eyes (strabismus), eye drops /medication for involuntary eye movement (nystagmus), use of dark shades for light sensitivity etc.
These may help attain better vision, and also prevent eyesight from worsening.
Ophthalmologists suggest wearing prescription glasses, with special lenses fitted to suit the specific needs of both eyes. But in Ocular Albinism, different visual capacities deteriorate and prescription glasses are of little help in improving the overall quality of sight.
Prescription Glasses
People with Ocular Albinism have a reduced visual acuity ranging from approximately 20/30 to 20/400.
If your visual acuity is not too deteriorated then wearing powered glasses or lenses may help see clearer. Although, for most people there is more to the loss of vision than just refractive error.
Due to the underdevelopment of the retina, even with the use of glasses a person cannot get an accurate picture of what he sees. It is because the retina of the eyes cannot ‘take an accurate picture’ of what it sees, which is why the image transmitted to the brain is also faulty.
For this reason, external aids can only bring slight improvement in vision, if not a complete rectification of faulty vision.
Use of Low Vision Aids
Unfortunately, people with Ocular Albinism have very limited treatments available. Of these few options, one effective method is the use of Low vision aids. Digital low vision assistive devices are amongst the state-of-the-art devices that are immensely helpful in overcoming visual problems.
Some of the low vision devices include hand-held telescope, monocular telescope, high-plus spectacles, hand-held magnifier, and video magnifier system. Each of these devices have a different utility.
In contrast, the digital low vision aids offer multiple features in one device, and low vision.
The Latest low vision aids, such as IrisVision electronic glasses revive your eyesight by providing several different features to minimize each of your vision problems. For instance, night blindness, photosensitivity, and refractive error can all be corrected with the use of IrisVision glasses, which have a night vision mode, adjustable light settings, and a zooming-in option, respectively.
IrisVision electronic glasses harness the power of a smartphone coupled with Virtual Reality (VR). IrisVision Live and IrisVision Inspire are two of the product lines that our team of experts have developed after extensive research with medical experts at John Hopkins Institute.
This powerful several modes, each mode can be personalized to suit your specific need.
Essentially low vision aids show a ray of hope for people to continue into their normal lives by managing their low vision condition. While it is not a permanent cure, it brings better vision and improvement for people living with Ocular Albinism.
