Albinism – Beyond The Blonde

Albinism in Your Skin

This one is especially for my friends in the Albinism community. I think we can all agree that – while the blonde hair is a blessing – the translucent skin is a curse! Especially when you have redness on top of that.

Covering up the redness with tan – do love this gúna though! It’s from Vanilla Boutique in Fermoy

I’m not sure about the rest of you, but I purposely keep my arms (in particular) covered. The problem with translucent skin is that redness shows constantly – I know for me, it means my arms end up looking like someone has slapped me, and the rest of my skin is deathly white! I’m so conscious of it, and the only way I’ve covered it before is with a spray tan. But constant spray tanning isn’t pracitical – or financially healthy!

So a few weeks ago, a friend gave me some bottles of a new skincare range that she’s been using recently – a range called Ocean Bloom. Usually, I won’t try a new range even when I do get a recommendation – my skin is so sensitive and the smallest thing can set me off with a rash or reaction. But I must admit, when I checked out the ingredients on their website, I was impressed. Their moisturiser has an SPF – super important for someone with albinism because of our lack of pigment. No parabens, no nasty sulphates or silicones – and all organic ingredients. They don’t test on animals either.

It’s great that the Ocean Bloom range isn’t tested on animals – I also just think this pic is super cute!

So I thought “I’ll give this a go!”.

I started out with the moisturiser and eye serum. Of course, I patch tested both first, and no reaction so I was ready to go. Woohoo!

Within a week, there was a clear difference in the redness of my face, something I’ve always had trouble with and something I put down to my albinism. The red pigment and hue in my face started to fade – not entirely – but noticeably enough. I’ve been doing a bit of Google’ing, and seaweed (the main ingredient) reduces skin redness, inflammation, and is a natural way to hydrate skin. So maybe this explains it? All I know is the redness is going slowly, and I’m super happy about that!

Some pics I took of the moisturiser, just for an idea of the consistency

Similarly with the eye serum, the dark circles around my eyes are gone way down too! Again, these circles are something I used to put down the strain on my eyes by everyday tasks – I’m sure you all know how difficult it can be to work around nystagmus. I felt it was my nystagmus made these circles worse – there’s a lot of pressure on my eyes day to day. So obviously I’m super happy with this too. It’s nice and soft around my eyes too – again, I’m so careful with what goes near them because it’s important to keep them as healthy as possible.

When these results were so good after just a week, I started using some of their other products – the main ingredient in the range is seaweed from West Cork. So it MUST be good for the rest of my skin, right?

Remember what I said about the redness in my face being reduced with the moisturiser? Well, the body butter had the EXACT same effect! I can only presume its because of the way seaweed reduces redness? Or maybe its because something soothing is on my skin. Whatever the reason, it basically means I don’t have to keep my arms constantly hidden if I have no tan on! R-E-S-U-L-T!!

I’m always the first one to share any good products I find – especially when it comes to something that helps with the lesser effects of my albinism. Trust me when I say this really helped the redness on my face, that I think is mostly down to my albinism. The same with the redness on my arms and parts of my legs. It hasn’t disappeared, but there’s a huuuuuge reduction in it. Hopefully as I keep using it, it’ll continue to reduce it. I’ve noticed that my skin is a lot healthier in general since I started using the moisturiser and body butter.

My favourite delivery of ALL time!!!! How cute is the packaging?

I’ve included links in this post if any of you want to have a look at Ocean Bloom’s online store, you can. If you guys end up trying these products too, please message me and let me know! I think it’ll be really beneficial for people like me with albinism who suffer from the same type of redness.

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Summer Sun

As some of you know, I was on a long overdue sun holiday last week – rakes of emails, tweets and Instagram posts have been totally ignored. While I was posting pictures here and there, I did my best to just sit back, relax, and enjoy a little disconnection from the madness for a week.

Chilling by the pool while on holidays in Puerto Del Carmen, Lanzarote

Right away, I know a lot of you are probably thinking “sun holiday, wouldn’t that be a nightmare for someone with albinism?”. And in the past I would definitely have agreed. If you ask my parents, there wasn’t one family holiday I went on in the past where I didn’t get some form of sunburn. It always seemed that no matter how many times I got into the pool with a t-shirt on or lathered myself in Factor 50 suncream I would always end up roasted and as red as a lobster! Nearly every holiday – even the Staycations we had here in Ireland – I always got a burn, and bad one at that.

Obviously, I had learned how sore the burns could be and as a (somewhat) mature 24 year-old, I decided I would do everything in my power not to get roasted this time – but I was determined to do it in style. From my experience, people can often overlook the psychological effect something like this can have. For me, anytime I’m out in the sun and there are all these tanned people soaking up the sun, it just serves as a reminder that “I’m different – I can’t do this”. And so, being careful in the sun in style is a diversion tactic of mine.

Myself, my dad Sean, and my brother Evan on the beach on one of the cloudier days

First things first – a spray tan was my first port of call before heading off. The thinking behind this was twofold; I’ll look tanned when I get there so I’ll fit in, and also there is an SPF in the spray tan my local salon uses so it’ll protect my skin too. Of course, I’m not silly enough to think that this SPF will keep me completely protected…. And so I bought a bottle of Sally Hansen fake tan and a brand new tanning mitt to pack into my suitcase. After a little research, I figured that because I would be applying ‘Sally’ a few times a day, the SPF 20 in it would act in a similar way suncream does when you reapply it. So there, I was sorted – I could wear my bikinis, sun hat and sun dresses without looking pasty and – lets face it – standing out.

I forgot to pack the tan and mitt!!!!!

So I’m sitting by the pool wearing a dressing gown on the first day because my plan fell apart – and I had refused to pack any ‘just in case’ sunscreen so I was in double trouble!! Luckily, I kept entirely covered by either shade or light clothes while at the pool that day, and also had the wherewithal to take a few (completely staged!!) bikini photos. Later that night, I was on the search for fake tan – which is hilarious considering I was on holidays in Lanzarote. It even got to the stage where I was Googling ‘where can I buy Sally Hansen in Puerto Del Carmen?’.

As it was getting to the stage where I was resigning myself to having to lather pasty white sunscreen on myself I found what is probably the best sunscreen I’ve used. AND it has fake tan in it!! I HIT THE JACKPOT!!

This is the sunscreen I found - a good SPF and a bronzer! — This is the sunscreen I found – a good SPF and a bronzer!

The sunscreen I bought and used for the rest of the holiday is the Australian Gold sunscreen with a built in bronzer. Happy days – I was protected from the sun AND i was a little tanned looking too. I used this religiously for the rest of my holiday, and I didn’t have one burn. Not one – which is a first for me! As soon as I got home – sun burn free – I knew I had to let everyone else know about this little discovery I made. For me, its about convenience and ease of use – this sunscreen helped me to ‘fit in’ with a little bronzing and it wasn’t sticky or pasty on my skin. Everyone was a winner!

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The Do’s and Don’t’s of My Albinism

Some time late last year, I had the pleasure of meeting a fellow blogger, Tom Hickey, you can find his blog by clicking here. We got to chat and share some of our experiences with each other, he being a fan of my blog, and I a fan of his. While our impairments were different and perhaps limiting in their own ways, I feel we really understood where the other was coming from. During our chat, we obviously shared ideas about future blog posts, and he suggested I write a “do’s and don’ts” guide, as I had mentioned a few times that certain stereotypes and ways people act around me can sometimes get to the point of being annoying, and sometimes hurtful.

So with that, I’d like to share with you all my personal* views of what I find, in my words, “what is ok, and what is completely not ok!”. And before I go any further, I’d like to point out that this is a personal guide, something I’ve written from personal experience that I think others might find helpful to. So here goes…

The Do’s:

Ask me about albinism, and my sight. Of course, if you’re reading this blog, you will realise I’m very open about my vision and what albinism is. And I’m happy to share this information with people any time they ask. I’ll always be happy to do that. The only way to raise awareness of any impairments and conditions are to be open and talk about them. And in my experience, people always love to learn.

“Who does your hair? I want to go that colour”. I absolutely love this question, and the follow-up of “how do you mean its your natural colour”? I always maintain an upside to having albinism is the fact I’ll never have to shell out on a dye-job for my hair, and never worry about roots. You have to take the good with the bad, right?

Offer some help. This isn’t a patronising thing to do, from my point of view anyway. If I’m in the local coffee shop in college and people ask if I need a hand bringing my drink to a table, I’m more than happy for that help. It means I don’t have to try and navigate obstacles like bags and chair legs while I have a hot liquid in my hand. Or if I’m getting a train and the staff offer to help me get on and off, it helps make sure I don’t get too lost. If I’m ordering food at a carvery counter and the server calls out whats on the menu, it helps to make sure I get to know exactly whats on offer and help me to choose – this is a particularly tricky situation because a lot of restaurants will have their menu written in chalk – a big no-no for me to read.

The Don’t’s:

Stare. How many times do I have to say this? I feel like a broken record. I’ve lost count of the amount of times people have walked towards me and stared into my face – now I don’t mean a stare that is normal human nature whenever you’re passing someone in a crowd and you notice their hair/coat/handbag, I mean a blatantly obvious “I wonder do her eyes move/can she see me” stare. Above anything else its extremely rude, but it can be hurtful, especially if the person being stared at (in this case me) is having a bad day. It’s a horrible feeling when people spend some of their time staring at you in the face, and its something I don’t really know how to handle, even now. Depending on my mood, I’ve been known to stare back at people – which really freaks them out if I’ve got my cane in my hand! But sometimes, I’ll just retreat to somewhere with less people around, sit quietly, and try to mull over what makes me so inherently different that people feel the need to stare and point. Like the guy who is staring at me in the library right now as I write this blog post. Irony eh?

“How many fingers am I holding up?” Irritation level 100. In all fairness, why would you ask someone that, especially someone you probably don’t know that well – generally these are the people who will think its ok to play Doctor and ask me. I’m open about my condition, as I’ve said above. But this is a line I feel people shouldn’t cross. And I’ll normally respond in a way befitting that.

Patronise. This is probably a generational issue in Ireland, and not a case of people being rude or obnoxious. And it isn’t something that annoys me as much as the previous two points. What I mean by patronising is when a person, normally an older person, will say something to the effect of “isn’t it great that people like you can read/attend university/get around on your own”. People who make these observations are usually someone I meet in passing, let’s say in a doctors waiting room or on a train. These are the people who mean well by expressing their happiness that “someone like you” can be independent. As I say, it isn’t a point that gets me as much as the other two, but its something to be mindful of because it can make you question how different you really are, and how people might see you differently.

To finish this blog, I’d like to ask again: what are your experiences? What are your do’s and don’t’s of your own condition – be it vision impairment, hearing impairment, physical or mental health issues? I found after speaking to Tom that we shared some do’s and don’t’s – but probably not all the ones I’ve listed here because everyone is different. Looking forward to some replies!

Me & My Albinism

If you took a look at me here’s what you’d see; an average looking 21 year old student who looks a bit younger than what she is, and is a little too short for her age, who sometimes looks grumpy but has an infectious smile and laugh when you bring it out in her. You’d see a girl with golden blonde hair, blue eyes and pale skin that is, more often than not, covered up by makeup that’s a few shades darker. One thing that would not be obvious at a glance is my hidden disability.

So what is my disability? A mouthful of a thing called “occulocutanious albinism”. A condition that primarly affects my sight but also gives me pale skin and stops me from tanning. Its pretty severe; I can only read the top letter of the eye chart in a doctors office – and that’s on a good day! Strong sunlight, my workload and the length of my day all have an affect on how “good or bad” my eyes will be during the day. It sounds pretty awful, and when a doctor or nurse who doesn’t know me reads this on a chart, I get look of pity which is unbelievably uncomfortable! It’s genuinely not that bad though – I absolutely love my life. I love my family, my friends, the course I study in college, the politics I’m involved in and everything in between! Don’t get me wrong – it’s not all sunshine and lollipops because I do have some awful days. But don’t we all?

What I’m trying to achieve by keeping a blog is to reach out to others like me, and others who are just interested. I want to let people know what college and life in general is like for someone looking out at the world with imperfect eyes. Hopefully I’ll achieve this without rambling too much and you’ll all find it interesting too!