Hi everyone how are you doing? I hope you’ve had a good week.
Today I will be talking about my visual impairment. I will try and explain as best I can, However, seeing as I have had this condition since birth I have no idea what it’s like to have full vision. Therefore, I have no real comparisons to give you. All I can do is tell you, as much as possible without annoying you, about the condition.
I shall do a separate post next week about what I can see and what I struggle with and how if affects my mobility and all the technological bits and pieces I use to help me in my daily life. This post is just a quick summary of the condition to make you aware of it and hopefully, give you some food for thought and if you want to investigate if further, you are more than willing to. in fact I urge you to.
I have a condition called OCA2 which is short for Occularcutanious Albinism type 2. Approximately 1 in 20,000 people worldwide are affected by some variation of OCA. ‘Albinism is a comparatively rare genetically inherited group of conditions which results in a reduction or complete lack of pigment (colour) in the skin, hair and eyes of people with the condition. This leads to pale skin which burns easily in the sun, virtually white hair, very severe short-sight and photophobia (a severe sensitivity to light).’ Albinism Fellowship, http://www.albinism.org.uk If you are interested in finding out more about the different types of albinism than there are a whole host of useful websites that can provide more detailed information on the subject, however, I am not a medical professional and don’t feel sufficiently well versed to give you that information.
However, what I can tell you is that whatever type of gene is affected the result of albinism is reduced to complete lack of melanin, which is the pigmentation gene. Occularcutanious albinism (mainly skin hair and eyes are affected) is the most common form of albinism. There are four types of OCA and depending on how much pigmentation you have depends on what number you are.
Type 1 = the least amount of pigmentation which can result in the stereotypical red eyes
Type 2 = slightly darker, yellowish or blond hair, blue eyes, slightly better visual acuity and creamier coloured skin.
Type 3 = typically more common among people of colour who may present with straw coloured hair and ever so slightly darker skin and hazel or brown eyes.
Type 4 = this form of albinism is very similar to type 2.
There are also a few other rarer conditions which have similar symptoms to OCA, however as they are separate conditions I shall not go into detail of them here.
As I have mentioned, I have OCA type 2. I have blue eyes, light blondish hair and relatively pale skin. However, the most difficult part of this condition in not the lack of pigmentation to the skin and hair. It’s the effect it has on my vision. My vision is, as recorded by specialist eye doctors, approximately 6/60 meaning I can see things at a distance of 6 meters that you can see from 60 meters away.
I also struggle with photophobia, no I don’t have a fear of having my photo taken, it means that I’m extremely sensitive to certain levels of bright or gleaming light. It can reduce my ability to focus on what I’m looking at and can make my eyes feel delicate and slightly sore after a while. I also have nystagmus which is an involuntary movement of the eye making it harder to focus on objects for too long. I am extremely short sighted which can be a real bugger sometimes, but hey ho all the cool people are short sighted, I joke of course.
People with OCA have to be very mindful of how much time they spend in the sun, and we tend to spend a fortune on factor 50+ sun cream because we turn into over-ripe tomatoes in 2 seconds flat if we’re not careful. Sunglasses are also a must have for those of us with OCA due to photophobia and the increased risk of developing melanoma of the eye. However, it does mean that we get to have lots of cool and fashionable sunglasses for all occasions, so there is at least one upside.
For now my lovelies I shall love you and leave you until next time :).