One of the things I love most about sharing our life as a special needs family is the opportunity to help others by sharing our experience and knowledge.
I often get emails from parents of newly diagnosed kids seeking answers to common questions, especially about albinism.
Because it’s so rare and it’s unusual to come across other families in your immediate orbit, connecting with others online is a great way to learn more about the condition and find out how to best help your child.
Based on these interactions, plus questions posed in albinism forums over the years, I’ve come up with this list of frequently asked questions about albinism, together with my answers.
Feel free to add your own questions (and answers) in the comments below so I can update this for future reference too.
Frequently Asked Questions About Albinism
Does the red eye lessen?
The red eye does lessen over time. The eyes of someone with albinism can appear to glow red or pink at times due to light reflecting back out of the eye (a result of little to no melanin present in the retina). It can appear worse when they are babies because they are so often on their back which means their eyes will tend to catch and reflect more light. However, I rarely notice any red eye with my 12 year old son, except in photos where we haven’t used red eye reduction.
Will their eyes always move around?
Yes, the involuntary movement of their eyes, called nystagmus, will always be present in someone with albinism. The movement is a result of the eye trying to find the best spot to most clearly focus on an object. When someone with albinism is excited or tired, the movement can appear to become more pronounced. You may also notice the nystagmus slows or even stops at times, when the eye has found the ideal focal point. This is called the null point and represents the place where the person with albinism can most clearly see.
Can people with albinism watch TV?
Yes, they can, but you may find they stand or sit very close to the TV so they can best see. My son watches TV really close up. I’ve tried to move him back but he can’t see detail if he moves further away. He sits on a fit ball now to watch TV and we are used to him being right in front of the telly!
Can you get Santa photos?
Yes, you can get Santa photos – we still get one every year. If you are worried about red eye, most of the time this can be addressed on the spot through computer editing before the photos are printed. If you are worried about how your child will cope with the light, the noise, the wait or with the jolly red man himself, look for a Sensitive Santa in your local area. Usually, Sensitive Santa sessions are held when the shopping centre is quiet (often before and after centre opening hours) so there is less noise, reduced light, minimal crowds and more understanding. Definitely get Santa photos!
Do glasses help with their vision?
Glasses are prescribed to address refractive errors, not for the albinism itself. Albinism and the vision issues that are commonly a part of the condition (photophobia, nystagmus, strabismus, poor depth perception, reduced distance vision, impaired visual acuity) cannot be cured. In my son’s case, his glasses have transition lens tinting applied so he wears them inside and outside. They don’t help him with his visual acuity (he is 6/48 which is just shy of being classed as legally blind) but they do help him to manage glare and reduce visual fatigue.
How do you go at the beach or the park or anywhere outside?
It’s possible to go outside safely as someone with albinism. You need to follow normal sun precautions and wear a wide brimmed hat, sunglasses, sun screen and protective clothing. It also helps to plan outdoor activities for earlier or later in the day, to avoid the midday sun, and to set time limits for outings. We tend to go to the beach in the late afternoon to minimise sun burn and glare (our son finds the reflection of light off the water and sand to be painful earlier in the day). It also helps to take along binoculars, a monocular or other visual assistance devices to help the person with albinism better see their surroundings.
Did you question having more children?
We saw a geneticist when our son was 6 months old. They ran us through the genetics of the condition and offered us genetic testing. However, we decided that we would deal with whatever came in future pregnancies and ended up having two girls without albinism (they are most likely carriers of the condition). I personally never questioned having more children because of my son’s albinism as I figured I already had him so it wouldn’t be an issue to have another with the condition. Obviously this is something each family needs to weigh up for themselves but we never questioned it.
What precautions did you take when your son was a baby?
When Gilbert was a baby, we had full window socks on the back windows of the car and made sure he was in the centre of the back seat, away from the sun. We also had a full sun shade cover on the pram which helped when out and about. He also wore hats and sunglasses (later transition tinted prescription glasses) from the moment we found out about his diagnosis. We also used a sensitive sunscreen, suitable for infants, to protect his skin.
What sunscreen is best for people with albinism?
We’ve tried lots of sunscreens over the years. I personally like the Ego Sunsense Sensitive which is a thick, physical barrier sunscreen (you can get it at most chemists and it’s affordable). Many people in the albinism community in Australia use Actinica which is a little more expensive but considered to be very effective and gentle on skin. I’ve also heard good things about the Cetaphil Suntivity sunscreen. In the US, Blue Lizard is considered the best choice for people with albinism. Regardless of the sunscreen brand you choose, make sure it has the highest sun protection factor (SPF) and ensure it’s applied and resapplied as directed.
Can kids with albinism attend mainstream school?
Yes, they can. Albinism affects pigmentation (and eyesight) but has no impact on intelligence. Extra assistance may be required in the classroom to assist with their vision needs and strategies will need to be put in place to help kids with albinism find their way in the playground. My son attends a mainstream primary school and is about to transition to a gifted and talented class in a mainstream high school. Albinism has never prevented him from excelling at school, with the right supports in place to help him along.
Is it common to have more than one child with albinism?
It is not uncommon to have more than one child with albinism in a family. Albinism is a recessive genetic condition, caused when two carriers each pass on an albinism gene to their child. Where two carriers come together, there is a 25% chance in every pregnancy of having a child with albinism. There is a 50% chance of having a child who carries the gene and a 25% chance of having a child free of the albinism gene. So it’s not uncommon for families to have more than one child with the condition.
How can kids with albinism see in the classroom?
My son, Gilbert, sits at a desk at the front of the classroom with a large screen monitor. He also has access to an ipad allowing him to enlarge print as required. His teacher uses an app to send information on the smartboard directly to his ipad so he can see what the rest of the class sees. Next year, when he heads to high school and starts moving between classrooms, he will use a laptop and a portable magnifier so he can keep up with his classmates. Technology has definitely made things so much easier for kids with albinism in the classroom.
How do you handle the glare inside and outside?
Tinted transitions lenses help my son – they turn darker when exposed to glare, inside or outside. He also prefers to wear his hat as much as possible when out and about, especially in shopping centres and other brightly lit settings. We have tinted windows at home which also helps reduce glare and venetian blinds to better control the light that comes into our home. He can struggle moving from indoor to outdoor settings as his vision is impacted by the changing level of light but he’s learned to take his time in unfamiliar environments.
There are so many other questions that I’ll address in future posts but if there is a particular question you’ve always wanted to ask, let me know in the comments below.
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Thanks for your super informative post 🙂
Thanks so much for taking the time to read it Paula. The more people who know a little bit about albinism, the more understanding and acceptance will follow x
This is so helpful, Kirsty. You have laid out the important questions parents might have and elaborated the answers well. Keep being a strong and wonderful mother, x.
Thanks so much! I hope it helps other families – I know this is the sort of information I would have loved to have accessed when my son was first diagnosed!
This is really interesting. I didn’t realise that albinism affects vision – thanks for the education.
Thanks so much for taking the time to read Kat. The vision issues related to albinism are the most debilitating. I’m lucky my son has enough functional vision to get around but many with the condition are legally blind and need assistance to lead independent lives. I hope this helps more people understand that and start dispelling some of the many myths.
What an informative post. I like to learn all about all types of medically related things. Such an interesting read.
I never knew there were sensitive Santas either. The world is improving for our children. Especially in the last ten years.
Definitely Jody. Sensitive Santa has changed the lives of so many families who previously just couldn’t wait in line for long periods of time. Now, it can be something to look forward to rather than something to dread….
I found that really interesting and informative. It’s great to see people connecting over the net and sharing information. My son has cerebral palsy but there were no internet groups when he was younger. It was isolating at times and hard to find answers.
That’s how I felt when we first learned our son had albinism. It was before social media and we didn’t know anything about it or anyone else who had it. I think the internet and social media have really assisted carers and people with disability to connect with others and feel less isolated and alone.
That was really interesting thank you for sharing! I am absolutely clueless about albinism and I have never met or known anyone that has been touched by the condition. Good on you for educating others and acting as a strong support for new albinism parents.
Thanks Breharne. This is the info I wish I had starting out so it only makes sense that I share what I know with others. Hoping they find it helpful too!
I love that you’ve written this; it answers the questions that people probably have but are uncomfortable asking. Kudos to you for all the informative work you do.
Thanks Ness. I know this information has already helped some families – fingers crossed it will also reach those who may be too scared to ask themselves.
Sensitive Santa! What a great idea.
Another great thing I read recently – Aladdin is doing a special show for children on the spectrum.
There are so many fabulous initiatives now because of awareness.
Thanks for continuing to make me more aware !
Yes, the Aladdin initiative is great – so pleased to see more and more ways we are including everyone in the joys of life!
This was really interesting. Like Kat, I didn’t know that albinism affected vision. And it’s great to know about how technology helps in the classroom.
Vision is the big issue with albinism, even more than the sun sensitivity and visible difference. We’re currently sorting out Gilbert’s technology needs as he begins high school next year. There really is a lot to be mindful of – I just hope we get it right!
So interesting. As it is genetic do you or your husband have any relatives with albinism?
Gilbert’s albinism was a complete surprise to both of us as we have no-one with albinism on either side of the family. We do, however, have night blindness and light colouring that seems to pop up in both sides of the family which is the only other clue we had to the genetics behind the condition.