Frequently asked questions are just that. These were put together by Martin Lang, a former Trustee for the Fellowship, and father Karina who has Albinism. Karina is all grown up now and is a Trustee of the Albinism Fellowship – here is her picture.
These were the frequently asked questions that Marin and his family faced because his daughter has Albinism.
These are simple, straightforward replies that could be given for others to use and adapt. Of course, everyone will answer questions differently because everyone is an individual. Not all families with albinism would respond in exactly the same way.
If you have a ‘Frequently Asked Question’, whether or not you are able to answer it at the moment, why not send it to the Fellowship? You may have answered the same questions very differently; if so, why not share your experience with us?
The second group are social and emotional questions and the third, a catch-all of responses to odd questions and comments that don’t really fit into either of the first two groups.
No, she can’t see clearly things that are far away or some distance away. That doesn’t mean she can’t see them at all, it may be that she can see an object, but not very clearly. Good contrast helps her to understand what she sees. From a distance she may see you, but she might not recognize you until you are close up or speak.
She sees in a similar way to normally sighted people, apart from the fact that things that you see in focus are blurred or out of focus for her. If you see a person at the opposite end of a football pitch from where you are, you probably can’t see their face clearly. However, you might know who it is because of their clothing or because they shout to you or because you expect them to be there. If that person is stood in white clothing against a dark background it is easier to see them. Clear contrast helps. If the sun is in your face the glare makes it more difficult for everyone.
Yes, it is unlikely to get any better, but like everybody’s eyesight it may get worse as you get older. Many children will quickly learn how to make the best use of the sight that they do have and compensate by developing all sorts of different strategies. When she was in nursery, she knew if I had walked in the room by the jangling of my keys, before I had even spoken a word.
They are just pale, sort of grey and lack colour. They aren’t pink or red, except on flash photos.
The sunglasses reduce glare from bright lights making it more comfortable for her. Not all people with albinism wear dark glasses. You have to find what best suits the individual. Some glasses react to light levels as you go in and out of doors.
It is a condition that you’re born with, that you inherit from your parents, where for a variety of reasons your body has no or very little melanin. This is important because it affects the way in which your eyes develop before you are born and your ability to see clearly objects close up and at a distance.
It is a condition called Nystagmus. People with albinism will have some degree of nystagmus.
Her head wobbles just very slightly sometimes to counteract the nystagmus, something she does automatically to help improve her vision. It is normal for people with albinism.
No and experts have advised us that is very unlikely that an operation could be done in the foreseeable future because of the nature of her condition. Some people may have an operation to correct a squint, or to change the null point but this does not generally improve their eyesight significantly.
People who have albinism tell me that it stops them being able to focus clearly on things in detail e.g. sometimes it is hard to read small print as all the figures blend into each other. Reading vertical lines on a graph is difficult, they either turn the paper around or tilt their head to one side. This is the same as reading the spine of a book on a shelf, you have to turn your head to a ninety-degree angle to read what is written. If you are tired or stressed the Nystagmus may get be worse, making you a little clumsy and unable to judge the distance of things away from you.
The cap reduces glare and it is more comfortable for her, particularly if the sun is low down in the sky. In summer, it shades her head.
Yes and often these are large print books, she uses e-books on a kindle or tablet or can use a magnifier to read them. Sometimes she listens to audio books.
Imagine coming out of a cinema in the middle of a bright afternoon. Until your eyes adjust to the bright light it is uncomfortable. People who have albinism have told me that if the sun is piercingly bright, it can be very painful. They can’t see anything when this happens and if they are walking down a busy street, it can be very scary when you have no clue where you are going. They have described bright sunlight as like the reflection from glass or a mirror from the sun.
To get a better view, if she were to sit further away, the screen wouldn’t be in clear focus for her. In our family, she sits close and still! The rest of us work around her. Some families have a link from the TV to a smaller screen, some buy ‘TV glasses’ with inbuilt magnification.
We use a high-factor sun cream, hats, long sleeves, long dresses and staying out of the sun in the hottest part of the day. We check the UV index forecasts.
Yes we do, we just have to be a little more careful than most other families. We often head for the beach when others are leaving.
Yes we do, but we take precautions to protect her skin.
It is the substance that the body makes and gives colour to hair, skin and eyes.
Different people like different sun creams. The best thing to do is to try them out for yourself. Look for a 30 SPF (Sun Protection Factor) as a minimum. Check for UVA and UVB protection.
It is white because it has no pigment, melanin gives most people colour in their eyes, skin and hair.
Yes! But she won’t have to dye her roots!
Yes, the results may be a little unpredictable and temporary dyes may not washout. Her hair does tend to take on a colour /dye very easily, when face paint or poster paint comes into contact with it, the colour is there for a while!
No, she goes to a regular mainstream school, but she does get extra help where she needs it in the school. Some people with albinism may go to a school that has a special VI (Visually Impaired) Unit. Others may go to a special school. This varies.
Yes, it’s just a case of knowing who to ask and how they can best help you. There are lots of people and organizations that are willing and able to help. It is just a case of knowing how to contact them and how they can help you. Check out the Fellowship’s website.
Yes just like everyone else.
In the first five years or so there were lots of tests by lots of different professionals. Now that she is older there are less tests and examinations. Now it is just regular eye tests and examinations.
An eye specialist confirmed the diagnosis that other professionals had suspected.
A monocular, magnifier, a large print Dictionary, a laptop/I-pad for class, and an i-phone with sat-nav capability was greatly valued.
Yes, she of course, has the balance to ride a bike. I ride right next to her to give a commentary of all possible dangers. As for adults and older children, it really depends upon the individual and where you cycle. A few are more courageous than others and cycle on roads, some people with albinism prefer not to cycle.
In the beginning it was very hard because we did not know what we were dealing with and there were lots of ‘unknowns’. As parents, it is the not knowing what to do, in the early stages, that is the most difficult time. It gets easier. After 10 years it becomes second nature. Giving a commentary of hazards on a walk with her or juggling for a position to view the TV around her, are just what we do as a family.
Most people with albinism can apply for Disability Living Allowance, now Personal Independence Payments for over 16’s . The form filling takes a while and it can be difficult to understand. A good idea is to keep a diary every day for a while and note all the things that you do over and above that which you would do normally, for a child of their age. Many things are done without thinking or overlooked.
For us it was easier. When we had the condition diagnosed we learned how to take practical steps to as to how best to help her. Meeting others overcoming the same issues was a great help as parents. Meeting adults we albinism was very reassuring.
She doesn’t know any different.
If it is in school, contact the school and tell them, discretely if necessary, what has happened. All schools should have procedures to deal with such incidents and hopefully it can be nipped in the bud. Give your child answers that they feel confident in giving when they are asked questions by their peers. Gently prepare them and talk to them about how they might deal with situations that might occur. Attempt to teach them to have confidence. Be open with people and answer other people’s questions if they ask about her condition.
On the spur of the moment it is often difficult to know what to say in reply. We often get the comment “cool shades” from shop assistants because of her dark glasses. My daughter’s favourite reply to this is ” Yea, I’m just back from Hollywood” with a sneaky grin. Obviously, I’m not suggesting you use this line, but just that you have something ready.
On another occasion as a 4 year old, she was running around playing a game of chase with some other children. A lady commented rather loudly about her white hair. Not pausing from her game she informed this lady “that’s because I don’t have any melanin”, as she dashed passed. This lady’s face was a picture and it was her who was lost for words.
She has been asked this on several occasions! A smile and a gentle tug of her locks is the way we have dealt with the situation. It would be easily to regard this as rude and react angrily, but we see the funny side.
There is some reluctance on the part on some parents and people with albinism to register as partially sighted. Some people prefer not to be labelled or pigeon holed. However, there are advantages in that it defines her sight to a particular level so that others, perhaps in authority, have to take note. Concessions are available to some places if you are registered as partially sighted. Once registered, it is up to you whether or not you choose to disclose the information to anyone else.
Legally drive a car on the road in the UK is one of the few barriers we have found so far. But she can drive. For an eighteenth birthday present she drove a car, with an instructor, around Brands Hatch. For her Gold Duke of Edinburgh expedition she canoed a river in the wilds of Canada. She has even been to Malaysia on holiday, where the sun index is high. The ‘Can’t do’ list is small and shrinking.
My little girl has grown up since I first posed and answered these Frequently Asked Questions. Karina is now a trustee for the Fellowship.