The following is an approach from Carin & myself, to put across a parents perspective. 

The questions listed here are questions that have been asked of families and people with albinism in general. We have given simple, straightforward replies associated with our experience with Bianca that can be given to others to use and adapt as they see fit. 

 

The following is divided into four groups.  First, those concerned directly with the condition of albinism.  The language is kept simple and straightforward for ease of reading and understanding. If you want definitions and technical stuff then go to  "What is Albinism" page or visit some of the sites on our Links page, under Albinism.

The second group are social and emotional questions.  The third, a catch-all of responses to odd questions and comments and the fourth......... the infamous myths.

 

 

Questions about the albinism (contents)

Can't she see properly?

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, it is not blurred vision, just with no detail (for more details click Bianca's "What can I see"). 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. Nature will always balance and her hearing is very acute........

 

What can she see?

Bianca sees in monoscopic vision, therefore, she has no, or very little depth of field (judgement of distances). Apart from this, generally though, she sees in a similar way to normally sighted people who see in stereoscopic vision, apart from the fact that things that you see in focus are lacking in clarity or detail, like a photo with low resolution but has been enlarged slightly or out of focus for her (for more details click Bianca's "What can I see").  If you see a person some distance i.e. at the opposite end of a football pitch from where you are, you probably can't see their face clearly as it will lack in detail.  However, you might know who it is because of their clothing, they shout to you or because you expect them to be there.  This would be similar to what Bianca will see but, at a more closer range. If the sun or bright light is in your face the glare makes it near on impossible for her to see, though you have to admit, to varying degrees it would be still difficult for us to see.

 

 

Will her eyesight stay the same?

Yes, it is unlikely to get any better, but like everybody's eyesight it may get worse as she gets older with normal depreciation pro rata as anyone would expect. 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. 

12 going on 85

Bianca could detect a voice from another room, even when we whispered, as her hearing is so acute, this turned into a game.  I used to joke with her that she would be the only one to hear a dog whistle.  So you see, nature will always find a way of balancing the senses.

 

What colour are her eyes?(contents)

They are just a sort of mauve, not a specific colour in normal subdued light. They are pink or red, if the light is at a certain angle as the lens of he eye is totally clear, therefore, the light reflects from the muscles and lining of the back of the eye, hence the pink effect.  Red eye will com fro a flash of a camera, the only difference in the photo is that the whole iris is red and looking large, where as normally you would only get a small dot in, say in our eyes.   This can be a little disconcerting for some people.  When we where living in Luxembourg, Bianca was  2 or 3 and I was holding her in my arms in a Fashion Boutique  Carin was looking around (surprise, surprise). One of the assistants started to come up to me to ask if I wanted to be served, she suddenly dropped back with her mouth open, grabbing her colleague, who then reacted in the same way, unbeknown to me, the spotlights that were all around, were at the angle that would make Bianca's eyes, quite literally, give the impression that they were glowing, needless to say, I left the shop.  Bianca has learnt to use this to great effect if she gets hassled by boys at a night club and rather than being treated as something spooky, has now become a bit of a party piece.... almost like Elizabeth Hurley in Bedazzled.... you can almost imagine the effect, when she turns her head, winks and smiles.... you almost hear the ding and see the little flash come from the corner of her eye in true Hollywood movie style.

 

Why is she wearing sunglasses indoors?

Bianca does not wear sunglasses, she refuses point blank as she feels it makes her look as if she is blind or a Hollywood caricature.  Indoors, she and the rest of the family have only subdued lighting around the house, something we are happy with, perhaps it was the 16 years as a DJ in the dimly lit clubs.  For others though the sunglasses help reduce glare from bright lights making it more comfortable for them. Not all people with albinism wear dark glasses. You have to find what best suits the individual.

 

What is Albinism exactly?(contents)

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. (for more details see "What is Albinism")

 

Why do her eyes wobble?

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

 

Isn't there an operation she can have?

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. Having said that, there is now two schools of thought with the coming of laser treatment and the possible benefit of transplanting a lens (coloured) into the eye, the latter will not benefit site but apart from the cosmetic benefit could help with the glare from bright light. Technology is moving forward at an incredible rate, so never say never and just watch this space............ Some people may have an operation to correct a squint but this does not generally improve their eyesight (significantly?) and is not generally recommended.

 

How does the Nystagmus affect her eyesight?

Bianca and Albino friends have told us that it stops them being able to focus clearly on things in detail e.g.  it makes it hard to read phone numbers and words as the individual images blend into each other. Reading vertical lines on a graph is difficult, they either turn the paper around or tilt their head from side to side until they can get it in perspective. If you are concentrating, tired or stressed the Nystagmus will get be worse, making you a little cautious and unable to judge the distance (depth of field goes) of things away from you. Bianca was nicknamed affectionately by all the Disc Jockeys in Radio Luxembourg (208) as scanner, this always used to bring a little chuckle from her and help take the stigma out of it.  As she got older she took A level Graphic design and passed, I know..... don't ask...... it was very hard work and I still think she did it out of stubbornness as everyone said she could not do it........ now that is a common trait in all Albino's and I do not need a medical journal or research to tell me that...

 

How does low vision affect motor skill and co-ordination development?
In the early months, some children with albinism may not be able to fixate on objects or make eye contact with family and friends. They may not reach out toward a rattle or toy and may "lose" an object if moved too quickly in field of vision. The depth perception is impaired which may cause a child's reach to be "off the mark" a bit. They may also have a head tilt or turn their head slightly to one side when studying an object. This is probably their best line of vision and the child should be allowed to turn their head in a way that makes their vision the clearest to themselves.

 

Why do they wear a hat or a cap, even in winter?

Bianca does not wear any caps except in extreme conditions, as like the sunglasses, it is a personal fashion thing...... The one thing that is common is a stubborn determination in all albino's to be as normal as possible in the way that they perceive that to be.  For some though, the cap reduces glare and it is more comfortable, particularly if the sun is low down in the sky.  In summer, it shades their head.

 

Can she read books?

Yes, most can with various aids but for Bianca only with the aid of her CCTV , sometimes large print books if she uses a magnifier to read them but the fluency is lost in this way.

 

Does the light hurt her eyes?

Imagine coming out of a cinema in the middle of a bright afternoon. Until your eyes adjust to the bright light it is uncomfortable. Bianca has told me that if the sun is piercingly bright, it can be very painful but she has learnt to squint and adjust her perception of what is around her and though it is scary, as she says, in  time you know what to expect and prepare for it. Other Albino's have described bright sunlight as like the reflection from glass or a mirror from the sun for Bianca, very similar but mainly everything goes like a white wash of images with very little detail.........

 

Why does she sit so close to the TV?

To get a better view, if she were to sit further away, the screen wouldn't be in clear focus for her but even then the images would be very diffracted.

 

How do you stop her burning, getting sunburnt?

We use a high-factor sun cream, long sleeves, long dresses and staying out of the sun in the hottest part of the day. With Bianca, initially we where able to get a subscription sun cream, due to high factor required in her earlier years.  Now they are available across most counters at the Pharmacy.

 

Don't you go on summer holidays?

Yes, Bianca just has to be a lot more careful.

 

Don't you go out in the sun?

Yes, but she takes the usual precautions to protect her skin like all of us should do these days.

 

What is melanin?

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

 

Which is the best sun cream?

Different people like different sun creams. The best thing to do is to try them out for yourself. Look for a total blocker or a minimum Factor 30  in Bianca's case this will only give her about 30 mins before coming into the shade and re-applying.

 

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

It is white because it has no pigment, melanin gives most

Salt & Pepper

 people colour in their eyes, skin and hair, the bit every one finds amusing is when she goes into the pool or under a shower, her hair goes nearly see through like fibre optics, from a distance she can look bald.... this she uses to great effect.

 

 

Will her hair always stay that colour?

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

 

 

Could she dye her hair?

The Punk Look

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!

 

Does she go to a special school?

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.  Bianca was originally destined for the Victoria school for the blind in Exeter, but we insisted that she would remain in mainstream and luckily, though hard at times, we did not regret that decision and Bianca has since said that she was glad because it gave her as near as possible a normal life, most importantly, a normal social life, which is good for someone growing up into adulthood......

 

Do you get lots of help?

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. (more on this shortly) Check out the Credit & links page for all the people who have helped us over the years.

 

 

Bianca & Friends (10)

Does she have lots of friends?

Yes just like every one else, up to her neck in boyfriends, as a father, that bit I am finding difficult to come to terms with now she is a lot older..... but hey,...... I'm an adult.... I can keep my feelings under control in this area!!?!?

 

Does she have to go for lots of tests?

In the first ten years or so there were lots of tests by lots of different professionals. This included a 3 day assessment at the Victoria School for the Blind, in Exeter as she was classed as border line Braille user and could have been boarded at the school, we fought to keep her in main stream (more details on this coming soon.....) Now that she is older there are less tests and examinations. It is just regular eye tests and examinations.

 

How did you find out she had albinism?

A Consultant at the hospital confirmed the diagnosis that other professionals had suspected.

 

Does she have any special things to help her?

A CCTV, this is very expensive but for Bianca, a must have, as she needs at least a 48 size font to read comfortably, monocular, talking calculator, specialist non glare table lamp, a laptop for college with the NOVA program (enlarges & scrolls pages), are examples.

 

Can she ride a bike?

Yes, she of course has the balance to ride a bike. Carin, Tanya & I ride right next to her to give a commentary of all possible dangers. As she is more an adult now, she prefers to walk or use Mum & Dad as a Taxi.    It really depends upon the individual, the extent of the albinism and where you cycle. A few are more courageous than others and cycle on roads, some people with albinism prefer not to cycle.

 

 

Social and emotional (contents)

Is it hard for you as parents?

Initially, 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. After 20 years it becomes second nature and 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, mind you, due now to her musical & viewing tastes, we have solved the TV issue by forking out for her own TV...... this has been done for both daughters though and albinism does not really come into it if you know what I mean........... ahhhhh, what bliss it is now.... he says with well meaning.

 

What benefits can I apply for?

Most people with albinism can apply for Disability Living Allowance. There are several components to this and it is awarded at several levels.  The form filling takes a while and it can be difficult to understand. If you want to apply for care assistance, 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.

 

What was it like when you found out that she had Albinism?

For us it, we where lucky. When Bianca was born, no one appeared to know or say anything.... the nurses nick named her snow drop and we noticed that she did not open her eyes during the day but came alive at night.... In brief, when the consultant came and told Carin and me, I went to my own Doctor, who remembered a couple from many years ago that had an albino daughter called Annette Hamilton.  We went round and she helped us realise that we can overcome any difficulties, especially as Bianca is a full Albino, we were able to learn 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. 

 

 

Annette Hamilton & Bianca

Does it bother her that she can't see very well?

 

She doesn't know any different to a certain extent but, now she is in her twenties there is certain thing that she will find frustrating but hey......... I always wanted to fly..............

 

 

 

 

What should I do if my child gets called names?

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. The way we did it was to make the teachers aware but not go and confront the culprits as this would highlight Bianca telling tales or grassing them up.... which will normally make it worse.  The teachers being aware of the situation can observe and catch them in the act... therefore not implementing Bianca directly.   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.

Each school will be different, Bianca was very lucky, as we were, Allenborn & Corfe Hills Schools where well organised, both in her education and with educating the children around them.  The local authorities where very good with there support.......... A special thank you to Wilson Brown, Adrian Chisom, Mr Wall and many others who made Bianca time at school as normal as possible.  This is a very emotive subject, so we hope to cover this in more depth shortly.

 

What do you do when people make comments that aren't meant to be hurtful?

On the spur of the moment it is often difficult to know what to say in reply. The best thing is to smile and have the odd, non aggressive quip ready, then walk on....... Life is to short and with having two daughters, nine times out of ten.... there is shopping to be done, places to go & people to see.......

 

Having said that, if we can and the person appears receptive, we will make the time to explain as much as possible, even if it is in the High Street................ on a rainy, cold day,................. oh alright, there will be the odd exception.

 

Other Questions (contents)

What can be done to help children with albinism in school:

Most children with albinism can function in a mainstream classroom environment, provided the school gives specific attention to their special needs for vision.

Contact with the school system, where possible, should begin well before kindergarten, since school education authorities provide school services to children with disabilities, so it is best to get in as quick as possible. You can initialise this by getting in touch with the education authorities offices and ask for the disability department, they will have various names that amount to the same thing but, I find a phone call cuts through all the bureaucracy and get to the source far quicker than letters.  The use of Braille is not necessary, though there may well be exceptions to this. Bianca was borderline Braille user…… the other terminology for her is legally blind, though she is able to see images……… see “What do I see” page where Bianca tries to explain what she sees…..

Children with albinism often prefer to read with a head tilt and usually hold the page close to the eyes. Occasionally it can be difficult to get them to use their glasses, as they do not notice significant improvement in their vision when glasses are used. Furthermore, use of glasses or books with large print can be difficult because of peer pressure.

 

Various classroom aids help children with albinism:

• High contrast written material: Children with albinism have a hard time reading worksheets and papers that are light or low contrast. Black on white high contrast material is better, sometimes light yellow on dark blue is good, mainly, anything that reduces the overall glare/brightness.
• Large-type textbooks: The school can usually obtain large type editions from the publishers of their regular textbooks, realistically, taking costs and time into account, it is more viable to print out the pages required as you go, prior to lessons, mainly because the rarity of this extent of visual impairment would mean a waste of resources, once the child has moved on. Because children with albinism often have difficulty keeping track of their place on the page while shifting back and forth between a textbook and a worksheet (for pictures/illustrations), it may help to allow them to write in the textbook. Worksheets may need to be copied on a machine that enlarges print size. Children with albinism do not always need large-type materials; however, large type should not substitute for poor optical visual aids. Use of audio tapes may be preferable to voluminous reading or long lectures. Bianca found this the most useful as she came up to senior level in her schooling.
• Copies of the teacher's board notes: The child with low vision can read the notes close-up while classmates read the board, sometimes this is made up by the teacher or auxiliary teacher/assistant.
• Various optic devices: Hand-held monocular, telescopic lenses mounted over eye glasses, (not cool), video enlargement machines (closed circuit TV, known as CCTV), and other types of magnifiers may help some people with albinism.
• Computers: Children with albinism should begin key-boarding skills early, since computers with software for large character screen display can help greatly with writing projects. Microsoft have a magnifying section in accessibility under accessories in programs.

 

Prescription of appropriate classroom visual aids requires teamwork of the student, parent, classroom teacher, vision resources teacher, and an optometrist or ophthalmologist experienced in working with persons with low vision, this is a must and Bianca’s success was attributed to such a team, in fact all the teachers wanted to be involved, just to learn about the subject. This however, was probably and exceptional case BUT should not be. It needs the determination on the Parent to pull it all together, remember it is your kid not theirs, so they need you to encourage them to push the boundaries.

 

In Bianca's case, it was originally suggested that she should go to a school for the blind and board there.  To be fair, it was over 20 years ago and things have improved (knowledge, internet, etc.).  We fought to keep her in mainstream and succeeded.  Today, in our opinion, most albino's can be educated in mainstream and be apart of society, normal kids growing up with normal kids...... make no mistake, it will be hard from time to time but it will be worth it in the end.  Having said all of that, there will be the odd exception and you must decide if your child is that one, in which case, a school for the blind will be very beneficial.

 

Is that a wig?

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 can be some spiteful and ignorant comments from time to time.  Both Carin & myself have been accused of bleaching Bianca's hair; when she was younger, especially..... This requires a severe biting of the tongue and a subtle quick remark that she is an Albino and walk on, as most stand there in total embarrassment.

 

Bianca has had to put up with over the years,  people's natural tendency to want to stroke her hair, this can be a little annoying but is treated in the same humorous way..... normally with making a gentle purring sound and a little smile that wakes people up to what they are doing, as sometimes they do not realise....... something that I must confess I have done from time to time........ oops!

 

Should I register my child as 'partially sighted'?

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. Normally you will get a free bus pass and Bianca was able to get a free train pass.... This however will depend on the local authorities. Once registered, it is up to you whether or not you choose to disclose the information to anyone else.

 

Are there any things that she cannot do?

Legally drive a car in Great Britain on the road is the only barrier we have found so far though in some States in the USA it is allowed if the eyesight is up to the required standard, People with albinism can go to hot sunny countries and even go skiing.  Most things she has a go at. We were advised that the Cello would be too difficult because the music would be too far away! The 'can't do' list is small, normally ball games squash, tennis, badminton, Bianca finds it quite amusing in the small ball games as all she see's, is people running around like idiots swiping at an imaginary object.... and driving legally, this will vary of course dependent on the extent of the albinism.

 

Myths (contents)

What is NOT true about albinism?
Even today, there are tons of myths out there about albinism. albinism is rare enough that accurate information is hard to come by even in medical texts. Some common myths include:

• Your child will be blind: There is a big difference between being totally blind and having low vision. Albinism causes “low vision”, or reduced visual acuity, but it does NOT cause total blindness! Some people with albinism have vision that is best corrected to 20/200, People in this situation are called legally blind. Legally blind is an official term used to qualify people for assisted services. It does NOT mean the person is totally blind.
• Your child will never dribble a basketball, never drive, never read, never…: The degree of visual impairment varies from person to person, as does the effects of each person’s low vision on what they personally find easy and difficult to do. It’s hard to predict the degree of visual impairment in infants since they can’t communicate what they see. The fact is, people with albinism participate in all kinds of sports, Bianca was keen on sports and won silver & Bronze medals in Gymnastics if it was not for an unrelated problem with her knee, she would have gone on and as she was just starting successfully, trampolining she could have gone on with both as her coaches where both Olympic gold medallists and of course very good coaches;  some are able to drive in other countries (States, etc.), and many can read normal print. Letting your child discover their own abilities and limits is the best way to discover how a child with albinism’s vision will affect what they can do.
• Your child can’t have albinism; They don’t have pink eyes: Generally, people with albinism have blue or slate grey eyes. Some people with greater amounts of pigment have green or hazel eyes. Those with lesser amounts of pigment will have an eye colour that has a reddish tint to it. Because the eye of the person with albinism has an iris which does not block out light (the lenses that normally is blue, brown in other people... is clear with no colour whatsoever), a flash photo of someone with albinism may show the light of the flash reflected off of the back of the eye, giving the appearance in a photograph that they have red eyes. Candles at the right angle will give a similar effect but the eyes will be flickering red/pink.
• Your child is or will be mentally impaired: Albinism has no effect on mental development.
• Your child is deaf: Albinism has no effect on hearing, mind you with the volume as loud as she has got it these days......... she may well end up that way.... or at least I will!
• Your child will have blood clots, will die early (and other extreme medical conditions):  Yea.......... alright and people who have brown hair will grow a third eye once they get to 50, those with green eyes will loose power of speech when they are in their late 30's, those with more than 14 moles will turn into frogs and witchcraft will be reinstated under new government ruling also, Medieval fashion and education of that time will become the in-thing..............................

This and more information for the UK checkout the Albinism Fellowship, 

for the USA check out NOAH (see Links Page).

Credits and thanks over the years to 

Wilson Brown, Adrian Chisom & all staff, Mr Wall & all staff, Martin Lang,

Allenborn School, Corfe Hills School, East Dorset Education Authorities, Cedar House,

Albinsim Fellowship, NOAH, R.N.I.B. Wimborne Rotary, Dorset Charity Association for the Blind, Princes Trust and many more.....

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