Question 1

Will her eyesight stay the same?

Accepted Answer

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.

Question 2

Why is she always wearing a hat or a cap, even in winter?

Accepted Answer

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.

Question 3

Can’t she see properly?

Accepted Answer

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.

Question 4

What can she see?

Accepted Answer

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.

Question 5

What colour are her eyes?

Accepted Answer

They are just pale, sort of grey and lack colour. They aren’t pink or red, except on flash photos.

Question 6

Why is she wearing sunglasses indoors?

Accepted Answer

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.

Question 7

What is Albinism exactly?

Accepted Answer

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.

Question 8

Why do her eyes wobble?

Accepted Answer

It is a condition called Nystagmus. People with albinism will have some degree of nystagmus.

Question 9

Why is her head wobbling?

Accepted Answer

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.

Question 10

Isn’t there an operation she can have?

Accepted Answer

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.

Question 11

How does the Nystagmus affect her eyesight?

Accepted Answer

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.

Question 12

Can she read books?

Accepted Answer

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.

Question 13

Does the light hurt her eyes?

Accepted Answer

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.

Question 14

Why does she sit so close to the TV?

Accepted Answer

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.

Question 15

How do you stop her burning, getting sunburnt?

Accepted Answer

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.

Question 16

Don’t you go on summer holidays?

Accepted Answer

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.

Question 17

Don’t you go out in the sun?

Accepted Answer

Yes we do, but we take precautions to protect her skin.

Question 18

What is melanin?

Accepted Answer

It is the substance that the body makes and gives colour to hair, skin and eyes.

Question 19

Which is the best sun cream?

Accepted Answer

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.

Question 20

Why is her hair blonde and where did it come from?

Accepted Answer

It is white because it has no pigment, melanin gives most people colour in their eyes, skin and hair.

Question 21

Will her hair always stay that colour?

Accepted Answer

Yes! But she won’t have to dye her roots!

Question 22

Could she dye her hair?

Accepted Answer

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!

Question 23

Does she go to a special school?

Accepted Answer

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.

Question 24

Do you get lots of help?

Accepted Answer

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.

Question 25

Does she have lots of friends?

Accepted Answer

Yes just like everyone else.

Question 26

Does she have go for lots of tests?

Accepted Answer

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.

Question 27

How did you find out she had albinism?

Accepted Answer

An eye specialist confirmed the diagnosis that other professionals had suspected.

Question 28

Does she have any special things to help her?

Accepted Answer

A monocular, magnifier, a large print Dictionary, a laptop/I-pad for class, and an i-phone with sat-nav capability was greatly valued.

Question 29

Can she ride a bike?

Accepted Answer

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.