Please Note: I am not an Ophthalmologist, Dermatologist or any other specialist in issues affecting people with Albinism. I am simply a mother of a child with albinism and I have a limitless curiousity, dogged persistence and a desire to do whatever I can to help my children.
This is my interpretation and understanding of Albinism put into my basic terminology from what I have been told, read or otherwise sourced. You can find links to reputable sources of information about Albinism as a medical condition in my Links Page.
What Albinism is
Albinism is a quite rare group of inherited conditions in which normal pigmentation is absent. It occurs in all types of organisms including people. People with albinism have little or no pigment in their eyes, skin and hair although there are many different types of albinism and in some cases only the eyes are affected. Generally albinism occurs at a rate of about 1 in every 17,000 people in the USA, UK and Australian populations.
All races can have albinism but their appearance varies depending on ethnic background factors (i.e. African Americans or Asian backgrounds will may have a darker skin pigmentation and different eye colour to caucasians with albinism).
Albinism is caused by inheriting altered genes from parents and these genes do not allow the body to make usual amounts of a pigment called melanin. Melanin is a compound that protects our skin from Ultraviolet (UV) light which causes our skin to tan when exposed to the sun.
Melanin also has roles in other areas of the body including the eyes. Without melanin the fovea (focal area at the back of the eye), nerve connections between the retina and the brain do not develop correctly and the iris (coloured section of the eye surrounding the pupil) lets more light into the eye than normal.
People with albinism are highly sensitive to UV exposure and have to be very careful not to get sun-burnt as they burn very easily and are therefor at a very high risk or skin cancers. They have significant impairment of their vision and can be very sensitive to bright light (photosensitive).
The two main types of albinism are:
Oculocutaneous Albinism "OCA" (pronounced ok-you-low-kew-tain-ee-us): in which is where melanin pigment is missing or in very small amounts in the skin, hair and the eyes. Alana has this type of Albinism.
and
Ocular Albinism "OA" (pronounced ock-you-lahr): in which melanin is mainly missing in the eyes and the hair and skin appear normal although probably a bit lighter in colour than their siblings.
The genetics associated with albinism are both complex and varied as there are so many different types of albinism. So I will go only as far as to say that albinism is not caused by any actions of the parents, phases of the moon, diet of the mother or anything else. In our case it seems both David and I are recessive carriers of the OCA genes and therefore have a 1 in 4 chance of any child we produce having albinism of this type. Our son Scott may have one copy of the genes and has a 50/50 chance of being a carrier. Alana obviously got both copies of the affected genes and thus has albinism.
To get a better understanding of the genetics of albinism I suggest you consult some of the references in the Links section.
Other than the above, people with albinism have no related delays in development, problems with intelligence, hearing, life-span, humour, or anything else that people will tell you. Unfortunately they don't have 'super powers' either.
In every other physical way they are the same as everyone else - they can have children, play music, enjoy drawing, playing, having fun and will show you a thing or two about determination, overcoming challenges and the spirit that helps us achieve no matter what the obstacles.
They can have a wide variety of careers and interests limited only by the visual impairment aspect of their albinism.
People with albinism do not have glowing red eyes except in extreme lighting conditions such as flash-photography. Most people with albinism have eye colours of blue/grey or light brown in certain ethnic backgrounds. Alana's eyes when she was born were charcoal-grey colour and have turned into a beautiful light blue which can change to gorgeous lilac, even pink when the light source is in a certain spot, and light reflects off of the retina on the inside of the eye.
The Affects of Albinism on People
There are four ways that albinism affects people : Vision Impairment, Skin Protection, Hair Colour and Social Stigma.
Vision Impairment: This varies not only according to the type of albinism that the person has, which is a factor in how much melanin is present during the development of the eyes, but also varies from individual to individual. Generally those with oculocutaneous albinism have more impairment to their vision than those with ocular albinism but everything from visual acuity (how well or clearly they see), photosensitivity (how much bright light is uncomfortable), level of nystagmus (involuntary movement of the eyes), strabismus (eyes not fixating or tracking together) and other complications such as near or far-sightedness and astigmatism can have greatly affect their vision.
Most people with albinism are quite significantly visually impaired but manage very well with the vision they have. Its hard to understand what they see as its not as simple as blurry vision for things far away or too close to the eye. Their vision might be compared to an old 1950's style television which you could see pictures on but not nearly as clearly or with such detail as today's television sets. They see colours just like usual vision but just find small detail hard to make out. Its hard to explain and equally hard to grasp a mental picture of what they see, although they certainly don't require guide dog under normal circumstances, don't walk into walls and although many do not have adequate vision to drive a vehicle, with the right visual aids they function very well without assistance and are not overly limited by their sight. They also have no idea what 'normal' vision looks like anyway so the million dollar question of 'what do they see?' is extremely hard to answer. The only thing I can say is that there are adults with albinism who have done a brilliant job of trying to put this into words far better than I could ever do. I thoroughly recommend you take a look at Bianca Knowlton's definition of her vision at http://home.clara.net/knowlton/family/Albinism/bianca.htm for a great insight into this topic.
People always ask if something can be done to improve this vision and apart from measures such as correcting far or near-sightedness with corrective lenses (just as we do for most of the population) or using vision aids to help magnify objects, there is not a magic cure for the vision problems of albinism (yet) and most will not have normal or near-normal vision even with glasses. However there is a great deal that can be done in order to aid a person with low vision in terms of reducing glare, increasing contrast, wise use of colours, large print and of course sunglasses/brimmed hats and the like. These are extremely important little things that can greatly assist in how well someone sees and they are mentioned a bit more in depth in my section 'helpful strategies'.
Skin Protection: Without melanin to help protect skin from the sun's harmful ultraviolet (UV) light, skin burns very easily (particularly in sunny, warm climates such as the beautiful weather here in Adelaide, South Australia). Of course, the old fashion of 'healthy looking tan' is now widely known as unhealthy for you.
Simple measures such as 'Slip, Slop, Slap' (Slip on a shirt, Slop on sunscreen and Slap on a hat!) and staying out of the sun during the times when UV is most intense (10am - 2pm or 11am-3pm in Daylight Savings Time) is pretty well understood. But altitude, latitude, surroundings (water, snow and sand reflect UV rays and burn areas usually shaded such as under a hat and even under the nose or chin), clothing (UV Protection Ratings vary greatly depending on design, material, age and wetness) all play roles in UV exposure. So its best to limit UV exposure as much as practical and take as many skin protection measures as possible. See also my section 'helpful strategies'.
Hair Colour: Not so much of an issue for those without the full pure white coloured hair which proves to be a real conversation starter and hard not to notice. While there are many elderly people with a head of white hair, its hardly something people are used to seeing on a child or teenager.
I guess never having to actually deal with this aspect myself I can't really say I know how I would handle this. Hair dye has some success but can give unpredictable results as most hair dyes are designed for hair with some pigment. But I can truly say since becoming used to Alana's snowy white hair I really love it. I hope she grows up to love it herself and appreciates the fact that it is something that makes her special - but like nearly everyone, as she gets older I am sure she will want what ever hair colour and type she doesn't have (like boring, straight brown) as it always seems we want whatever we don't have. At least we will save money on peroxide! There are so many people out there who just wish they got noticed, I will try and convince Alana that never just blending into the crowd can be an advantage.
Social Stigma: I guess this can be the most disabling factor of having any affliction where you look different from what is considered 'normal'. I don't have any real authority to write about how anyone should handle this other than always being the skinny, white skinned girl. My heart goes out to any child or adult who gets teased or taunted or just stared at for being different. The only consolation is that it happens in varying degrees to all of us because we are thin, fat, tall, short, hairy, physically-impaired, have a speech impediment, are from a minority group or aren't good at sports or reading or absolutely any reason that people will find! I don't think anyone makes it through life without experiencing some sort of bullying or exclusion. But to look different even from your siblings and parents can be extremely hard. All I can say is that people can be ignorant, cruel, insensitive and self-righteous. Don't let stupid people influence how you feel about yourself and what you do. I will tell Alana to be strong, confident, self-assured and to celebrate what makes us different. What a boring place this world would be if we were all exactly the same! Besides I know plenty of people who would do anything for a beautiful full head of white hair!. Perhaps also my section 'Dumb things people say' will give you a few laughs about how people really say the dumbest things.