Vitiligo and Pregnancy

Forgive my recent absence from the blog as I have been becoming more acquainted with my toilet bowl in the New Year than with my MacBook... due to morning sickness!

Yes, I am very happy to announce that I am expecting my first child this year :) I wasn't sure if I wanted to let such a wide audience of people, who don't know me personally, know about this... but now that I am safely at five months, I believe that the past two years of connecting with people with Vitiligo from around the world served a huge purpose in my life. I see Skinned Alive as a part of my bigger family now and a forum where I can release some of my worries.

This blog post is, however, less about announcing my pregnancy than it is about voicing the thoughts in my head regarding the theory that Vitiligo is hereditary. In my particular case, this is not true, as I am the only one in my family and family history with the condition. However, as it has been explained to me, it is more to do with the presence of a specific gene than the presence of the actual condition. This concerns me deeply when it comes to having children of my own now, understandably so.

In certain regards, my actual journey with Vitiligo, albeit ongoing, was so long ago in my mind (my childhood with changing skin colour) that in some ways I feel I have surpassed those particular trials and tribulations and moved onto a different set of difficulties following my return to Trinidad which now concerns my race and identity.

To imagine my child ever having to go through something that in some ways I have forgotten (for want of a better phrase) or pushed to the back of my mind, is a really hard thing to think about.

I can't deny the possibility that my son or daughter may one day develop the condition. Even if I don't wish to think about it right now, I must accept it and be prepared. The questions running through my head:

• I was strong enough to get through it as a child, but as a woman, do I have what it takes to help my own child get through this? 
• Can I be like my mother; will I have those qualities as a mother (not as someone who has Vitiligo) to guide my child through this, or any condition, with unconditional love and strength and be able to mask how I may be feeling about what they are experiencing in order to get them through it? I know there must have been nights my mother - and father - cried without me knowing, all the while pushing me to be social and live a happy-go-lucky childhood... The thought almost kills me...
• I won't always be there to defend my child in the event that something happens or that they are visibly different to their peers. Will I be able to teach them enough to give them the confidence to step out and face the world when I am not around?
• Even if my children do not develop Vitiligo, they will still need to learn about why their mother looks so different (even to them) - will I raise kids who are strong enough to not let what others say about 'Mummy' affect them, be it in the school playground or on the street?

Of course, I will teach my babies to be tolerant of people from all walks of life and of course they will know all about their mother's condition as they grow older and can process such information. I just hope that the same strength of character that my own parents showed - which I could never understand as a child due to ignorance but today speaks volumes to me with everything that I accomplish thanks to what they did for me and gave to me in terms of personality and drive and passion - is a strength of character that I can find when I need it. 

Even though she is my mother and the closest person to me since birth, she had to watch me grow through something that she could never fully understand due to not having experienced it. And that's gotta be hard if it's your child. If my children experience Vitiligo firsthand, will it be an advantage that I know what they are going through and can relate to them in that sense? Or will I be too emotionally involved in their experiences by recalling my own journey and stumbles and placing it on their shoulders? I'm in two minds about this (and very emotional in front of my computer screen right now!)

At this point, I can only pray for the best and know that the same people who helped me to become who I am, will help me to raise my child to be exactly who he or she was meant to be, Vitiligo or not. When all is said and done, bring it on... 

Frustration

Everytime I think I've got it under control and people have seen enough of me to warrant less ignorance and a little more respect, some toad crawls out from under their rock and makes a totally stupid, indiscreet, completely tactless comment about my skin colour that just makes me so angry by this point. I guess this is partly because of all that I've tried to do in the past year and a half to shed more light on my condition, including hosting the first Walk for Skin in Trinidad, that I'm surprised that such a small country could still have people who haven't paid attention to any of this and opened their minds a little bit.


My partner's neighbour decided the other day to comment to him rather blatantly:


"Aye, we see you bring this white girl home by you sometimes - she's like a vampire man! Where did you find her?"


Which, of course, warranted the string of obscenities my partner couldn't hold back and needless to say, he no longer speaks to his neighbour.


Today, I came home to find a comment on a Facebook photo in which I am tagged (in a friend's album from 2 years ago), where someone I don't know decided to actually press the Submit button and ask:


"Wow!! How is she so white like that?!"


This really rattles my nerves. First of all, because I AM TAGGED in the photo. Which means that you are such a bloody tactless human being that you couldn't even ask your question in a private message to my friend, but instead didn't mind that I saw the extent of your ignorance. Not to mention that were I a weaker person, your comment would make me feel like I was a lesser human being because you felt the need to point out something I have no control over - my skin.


But what really annoys me about these situations is that these are 'my own people', Trinidadians, some of the most ethnically and racially mixed people on earth, making these comments towards ME, one of their own (although admittedly I don't always feel like I belong). Furthermore, sometimes I just wish I could flip the script: how about I call out to a very dark person across the street one day and address them as "Blackie!!" in front of crowds of people? Or how about I comment on a photo about someone's dark skin colour? Do you know how unacceptable (even racist) that would be of me?! 


So how is it any different when it is someone who is "too pale"?! And why do people even feel the need to comment on the obvious? Yes, my skin is white, anyone with half their vision can see that, what contribution did you think you were making to the grand scheme of the world when you chose to point it out?


Answer me that.

Pursuit of Peace of Mind...

So, for the past two months I have been applying a bleaching cream to the brown spots on my face at night when I go to bed. Thankfully, this hasn't had the same reaction as the 14% Triluma that I tried out two years back. My skin actually hasn't changed at all with this new cream, except that in the last few days before the scheduled chemical peel I did notice a slight burn happening whenever I put the cream on (which I assume is a good thing).

On Wednesday (two days ago) I had the deep chemical peel. This is supposed to strip back the layers of skin and expose the fresh skin underneath which will even out my skin tone and reduce the appearance of the brown spots. Let me tell you, I never prayed so hard in my life for those five minutes that the solution was on my face! 'Burn' does not begin to describe it! As I've told my close friends, it felt like millions of red ants were crawling and feasting on my face. After that, I has to keep splashing cold water on my face and then pat it dry. You could see the frosting of my skin (which apparently is a good thing) and after a few minutes, it started to subside and just left my skin very red. Much similar to a roasted tomato.

Right now I am home and out of commission for about a week while the peel works its magic. It's Day Three and my skin is very tight (I feel like calling myself Botox Head) and glossy - much like a bad sunburn, which is exactly what my dermatologist said it would feel like. Of course it feels tighter if I splash water on my face, so I've been given a cream - imagine Vaseline to the power of a thousand - to slather on generously at night to ease the tightness. This makes for very messy pillows, I can tell you that! It also doesn't help if you move a lot in your sleep, and I often find myself waking up to my hand covered in the stuff from touching my face, or hair stuck to my cheek which is quite irritating!

All in all, I'm excited to see what will happen from here. My skin is very red and tender but once the dead skin starts peeling off (which should be by Day Four), I've been told I will have 'baby's skin'... yay me! Of course the pigmented spots will not be completely eliminated by this procedure but they will be greatly reduced. If, in a few months, once my skin is completely healed (with lots of sun protection - I'm on the strictest orders for the next three weeks) from the chemical peel, I feel the need to discuss something more permanent like Benoquin, then I think I will head back to the dermatologist upon my return from London and see how necessary that is. 

For now, I'm just looking forward to not needing to rely on my MAC makeup so much every time I leave the house - it has a tendency to grease up after a few hours of wear, especially in a tropical country like Trinidad! But, thanks to a very special person who thinks I'm "more beautiful without makeup on", I've been feeling a lot more confident, even with my roasted tomato face!

Decisions, Decisions...

I've been contemplating it for weeks now. The little "tip-of-a-pencil" pigment spot on my forearm is now the size of a small mole. How's that for rapid? Not to mention the two little creepers that have appeared un-announced above and below my right eyebrow.


I contacted my dermatologist to discuss my options. Well, the truth is I only really have two options: live with it and see what happens, or de-pigmentation. So I'm making an appointment to discuss de-pigmentation really. No decisions on going through with it after discussion yet.


Scared? Me? To death. It's more the psychological decision that is bothering me - I used to cringe at the thought of someone choosing to bleach their skin, simply because when the option was offered to me at the age of 12, it felt like a rejection of my true identity. I know it's "what's inside that counts", but let's get real, the colour of your skin is a part of your identity as well. I mean, look at what the public did to MJ when I was going through my transformation, how could a decision like that not bother me?


So... I hope I have your support. And I hope nobody else judges me for this decision (especially those who have so ignorantly commented that I am 'rejected by the black community and will never be accepted by the white community'). I'll let you know how the appointment goes... Oh, and I would still want to keep that cute little constellation of three spots forming a triangle on my left cheek. I don't know why, but I like them!

Role Reversal...

I am not a hypocrite. I am not a hypocrite. I am not a hypocrite.


If you only knew how much I find myself freaking out these days when I see new spots of pigment appearing on my skin. They're tiny, unnoticeable, ridiculously small to the untrained, non-Vitiligo-recognizing eye... 


First it was my face... I accepted it, embraced my "freckles", learned to love them (am still learning), and then of course found MAC makeup and my life was transformed by how easily I could camouflage the newcomers, the intruder spots, the invaders who started arriving without warning. The freckles on my face are in constant fluctuation - some grow, some shrink, some fade. I learned to deal with it because I can cover it and it's not much compared to what other people have to go through.


And then, I got one or two little freckles on my shoulders. They're cute, I think they look like sexy little moles when I wear strapless or sleeveless clothing. They are also tiny, beautiful brown spots that I actually don't have a problem with because there's only a few of them and they are very strategically placed on my shoulders to look a little attractive, I think...


And now a week ago, I noticed a tiny, minute, looks-like-the-tip-of-a-pencil spot starting to form on my forearm. And the freaking out begins. In the past year it seems my skin has decided to reverse itself. People will tell me I'm being silly, they are only small dots of colour, it means nothing. But they don't know that's how it all started 20 years ago. Small little dots of white that meant nothing at the time.


I'm getting way ahead of myself and my thoughts are moving faster than my brain. Can I do this? Can I go through this natural ebb and flow of my skin playing tricks on me and deciding when it wants, without any consideration to my life and my wishes and my current state of mind, and how long it took me to get to this point of acceptance? Can I go through this... AGAIN? Another 20 years of my skin reversing itself, very possibly driving me to madness in the process and sending me straight over the edge of yet ANOTHER identity crisis?


Do I reconsider my thoughts on bleaching? And risk being labelled a hypocrite even though everyone should understand that things change, people change, opinions change? And that you never know a person's life until you experience it? Do I wait it out? Do I monitor the situation or take action now? Do I smile and lie to you guys, my readers, and pretend like right now it's fine and I can handle this and if my skin reverses itself, I'm going to hold my head high and go through it publicly like I did before and then be the same person at the end of it all?


I'm not a child anymore. This time is different. There is no bubble of protection like there was before. I have learned to rely on my skin to help me be who I have to be now... if it changes on me again, I'm scared to death that I will change as well...


Rambling thoughts of a crazy person...

The Most Wonderful Time Of The Year...

Ah, summer! That time of year when coats and cardigans are packed away and the shorts and bikinis come out. Trips to the beach and foreign, exotic locations for vacation with friends and family… Sun, Sand and Sea…

Summer, the time of year that is also known as:

The bane of my existence.

This is what summer means to me, my friends… Please try to understand if you will:

No more long sleeves, no more layers, no more hiding the patches or the whiteness of my skin so that now, in the summertime, people can comment every two seconds on some aspect of my outward appearance...

… Of course everybody else is getting that beautiful creamy caramel tan that I can only hope for in my wildest dreams or imagination, the kind of tan that makes me only seem whiter when standing next to them. Which brings me to my next point: Summer, the time of year that the contrast between my skin and the rest of the world becomes so evident that on one occasion, someone had the nerve to ask me if I was sick or dying because I was “so damn pale”.

Even worse, there are those select people who say ridiculous things about themselves such as: “Oh my! Look how dark I’ve gotten! I look so black now after being in the sun all day!” as if that is a bad thing, while I stand there and only dream of what it would be like to have a tan… While I stand there mustering every ounce of self-control to not scream at them that they are lucky, to stop complaining about how dark the sun has made them. They went out without sunscreen on purpose, so what else did they expect to happen?!

Summer is the time of short skirts and sexy legs at parties – my legs, though they may be a nice enough shape despite being a little on the short side, serve a double purpose as fluorescent lightbulbs on any dance floor next to the chocolate, mocha and caramel pins of perfection that look healthy and toned. People with a healthy tan glow… Me? I just glow… In the dark!

Summer is hard. I don’t show my legs – too much white, too much pale, too much of a spectacle. I wear short dresses and skirts at parties with the rule that I always wear a light pair of stockings as well, never bare legs. That in itself took years to happen.

I loathe wearing makeup to cover my freckles during the day as it feels like my face is melting and I’m sure people can tell, yet I don’t have the courage to go without it when everyone else is looking so perfect and healthy from the glow of the sun. Trips to the beach are a menace; even when I do get in the water, my head needs to stay above it to avoid washing off my mask and looking like a clown. I much prefer to rent a beach-house or villa with a pool and go with a select group of friends who have better things to do than to mind my skin and how reflective or transparent it is.

Summer. It’s the most wonderful time of the year… For some.

Letter From A Skinned Alive Reader

I get a lot of emails and messages from people around the world throughout the week, which usually spur me on to continue writing on the Skinned Alive blog. Sometimes a letter will help me choose what topic to touch on and sometimes, like now, the letter itself is too good not to share.

I was sent this last week by a reader and her letter was very touching. It helps to see things from someone else's perspective. She highlights perfectly what it is to be afraid of your patches and how vulnerable it makes you. Here's her story:

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Hi Darcel,

Thanks for writing back to me a couple weeks ago. I enjoy reading your blog posts, as well as your Facebook posts on Skinned Alive. I wanted to share something with you that took place after I read your blog posts a couple weeks ago.

First of all, just to give you a little background, I have always felt very ashamed of my Vitiligo and have really struggled over the years to come to terms with it. I have always kept my patches hidden as much as possible and have struggled with self-acceptance on many levels. I also have really bad eczema, two different types, so it sometimes feels as if my skin defines me somehow.

My background is a bit different from yours. It was a bit unstable, and there was some abuse, which is what started my lack of self-acceptance. I was always told I was ugly and worthless....even though I really wasn't. I had beautiful long dark hair as a child, but I never believed I was beautiful. When I developed these skin issues, it made it that much harder for me to love and accept myself. No one in my family that we know of has Vitiligo, or eczema for that matter, which leads me to believe that my skin issues were the result of emotional trauma. If you think about it, our skin is the biggest barrier of protection against the outside world. The fact that I have so many skin issues tells me that my "barrier" has been violated and feels so vulnerable. I have slowly been trying to address some of these things from a holistic point of view (body, mind and spirit), and I am introducing a lot of compassion into my life that I've always lacked from others and from myself. I'm trying to 'love' on my skin and the many issues I have with it.

When I stumbled upon your blog and read every post, it spoke numbers to me. You said, "Sometimes I let my skin matter to me more than it matters to others." 
Isn't that the truth?!! I have paid more attention to it than anyone else has. My husband has never had a problem with it, nor anyone else, but I continued feeling repulsed by it, covering it up like some horrible disease.

I found myself in tears when you said, "My skin won't behave itself, so I sometimes feel like I am losing me, or the me I have learned to identify with." 

I could identify with that SO much. For years and years my biggest fear was that my vitiligo would reach my face, and that everyone would finally see it and be repulsed by it. I was terrified of the idea of it on my face. I didn't care if it showed up all over my arms and legs, just as long as it stayed far away from my face. Unfortunately six months ago, I developed a patch directly above my left eye, and it is slowly spreading. I cried and cried when I first noticed it. It was my worst fear coming true and I felt like I was slowly loosing myself. I'm still scared!

I knew I needed to show this spot on my eye compassion, rather than doing what I have done for so many years....dodging the mirror with disgust and shame, hating every part of my Vitiligo. I was still struggling to show it compassion until I read your blog posts. I loved the quote by India Arie, "I am not my hair; I am not this skin; I am not your expectations, no... I am not my hair; I am not this skin; I am the soul that lives within." 

After reading all of of your posts, I found myself standing in front of a mirror crying so hard ....feeling SO sad that I had been so mean to myself all these years. Sad that I had made it so much bigger than it really was. Sad that I had 'abused' myself by rejecting my skin, instead of loving it. I stood in front of that mirror finally able to look at myself and say, "I am SO sorry! I'm so sorry for being so mean and hurtful. From now on it stops! I will learn to love and accept you!"
It's been two weeks since that time and I am slowly learning to love myself...ALL of me. Not just my skin, but myself as a whole. For years I felt defined by my skin. It was as if I was walking around with a distorted pair of glasses on, seeing only the bad things in myself....things that no one else but me saw. I have been my own worst enemy. I find myself slowly taking off those glasses now and becoming 'whole.' 

I would love to be strong enough one day to be of some encouragement and comfort to someone else going through this. Right now, however, I am on this new journey trying to heal and show myself compassion every day.

My husband and I are currently living in Italy. I find myself traveling all over, trying to 'find' the me that I kept hidden for all these years. I want to know myself in a way that I have never known before because I was too busy beating myself up. Last week I went to Paris. This week I went to Venice....and who knows where I'll go next week. All I know is that I just want to let "LIFE" inside my heart and start living! I don't want to be that timid, frightened girl anymore. I want to be free to love myself no matter what I look like!

I love that you have learned to accept yourself from such a young age. I'm 30 years old and I feel as though I am taking baby steps for the first time in my life. I'm finally ready for healing and peace. I'm ready for a new start.

I also quoted Ann Curry when she said to you on the Today Show, "Compassion and understanding is the road, and not separation and judgment." That's where I am right now. Learning to show myself compassion and understanding for the first time in my life!

I just wanted to share that with you since you've played such a big part in this new 'path' I'm on now. The only thing I wish were different about your blog is that you would post more frequently! :) I love reading what you have to share. 

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"Lucky", You Say... Part Two

My Vitiligo spread to my arms and legs, then torso before taking over my face around the time of puberty.


Here I am aged 8 in Cyprus - you can't see my arms and legs, which shows how easy they are to hide (when it's not summer), but you can see my natural original colour on my face (except for the small de-pigmented patches at the very top of my forehead by my hairline)... This was just before the Vitiligo picked up the pace and patches started growing and multiplying. You can also see it on my knuckles and the back of my hand in the first picture.

Personal Update

Hi to everybody. 
I know it may seem like I have forgotten you and I'm sorry about that. The truth is that I have been affected by a number of personal blows lately, not least of all being the disaster in Haiti which is very close to my heart, especially as a Caribbean citizen. Please read the end of this message to find out more about how you can help in Haiti.

I've always been determined to show only strength, positivity and factual information or worthwhile opinion for discussion when speaking about my experiences on Skinned Alive because of how much many of you have told me it helps you. However, at the moment I find it hard to write on the blog under a pretence that I am 100% strong, 100% of the time. Like everybody else, I am only human and have my weak moments, so I only ask that you be patient with me until I can continue to write at the standard that Skinned Alive deserves. 

Please feel free to continue sending in your personal messages and questions, I do read and appreciate them all and I have not forgotten you. I will always make the time to reply :)

Be Blessed Always,
Darcel
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In this time of need, it is very important that as many resources get to Haiti as possible. The best thing that you can do right now is donate clothes, shoes and/or non-perishable items such as canned food and bottles of water wherever they are being accepted. I know that Subway outlets worldwide are accepting cans of food in exchange for a sub of your choice.

Unfortunately, with monetary donations, you can never be sure how much of your donation is reaching those who need it. I know that there are a number of websites where donations can be made, as well as numbers you can text to help raise funds. Some of these are scams and I would urge you to be vigilant and do your research. There are a couple of organizations that I personally trust and can vouch for so please feel free to donate via these links, if like me you have been confused as to who can best put my money to use. 

Avaaz.org is an organization that tackles a number of world issues and I had the pleasure of taking part in the Give Peace A Hand 3-mile long handshake and walk for the Dalai Lama's peace talks here in London 2 years ago. They have currently raised over 1 million pounds for Haiti and are still accepting donations at:

https://secure.avaaz.org/en/stand_with_haiti 
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Many members of my United Nations family have been caught in the earthquake. Many of them did not survive and even more are still missing following the collapse of the United Nations Headquarters building. The UN survivors of the earthquake have proudly stuck together and chosen to remain in Haiti to aid relief efforts and recover their mission.

The United Nations Federal Credit Union is accepting cheques from non-members of the UN that can be made payable to the "Relief Fund" and sent to:

Relief Fund
c/o UNFCU
24-01 44th Road
Long Island City
New York 11101
USA

Thank you for any help you can offer!

De-Pigmentation, Re-pigmentation...

For most Vitiligo sufferers, the major concern when patches of lighter skin start to appear, grow and multiply is: How do I get back my original skin colour? How do I make these white patches disappear?

Undoubtedly, this was the case for me as well when my Vitiligo first started developing. Treatments are most definitely geared towards retaining and restoring the original skin colour to the patient. Of course, as I have mentioned before, in very extreme cases of Vitiligo such as my own, where more than 80% or so of the body is completely de-pigmented, the option to “bleach” the remainder of the original skin colour could be put on the table. Please note that this is not an easily attainable option and most doctors are incredibly wary of suggesting this to their patients as it is indeed irreversible but also there is a question of the psychological effects and therefore the ethical issue of choosing that path.

The automatic assumption, and very rightly so I would imagine, is that every patient wants to retain their original skin colour, because that is the way we were born and that is the way that we know ourselves and how our peers know and identify us. Everything that can be done will be done in the hopes of eliminating, or camouflaging, those pesky and devastating white patches.

After almost twenty years, my skin is now completely one colour. Granted it is not the colour I was born with, nor is it the colour I would choose had I been given the choice at the time, but it is the colour I ended up with. Over the years, I have been asked:

• ·         What if your colour comes back?
• ·         Can your colour come back?
• ·         How would you feel if your colour came back?
• ·         Do you want your colour to come back?

When I chose not to bleach the remainder of my dark patches (at some point, “dark skin with white patches” changed to “white skin with dark patches”) at the age of twelve, I did not feel mature enough or responsible enough to dictate what colour my skin should be. The thought of doing something to my skin that was irreversible was terrifying to say the least, because at that time, I knew that the possibility of the Vitiligo reversing could indeed happen. I did not want to eliminate the chance of regaining my beautiful brown skin.

That was then and this is now. I always thought that having my original skin colour would solve my problems, being able to tan would stop me getting taunted by others on the beach or in the Caribbean, everything would be fine if I turned back to the way I was.

Now, I am older and just a little bit wiser.

It took me almost two decades to get to this point. Two decades of my life spent adapting to the changes that my body was making. And two decades to finally be a person that I could live with and accept and that others could also accept for who I am. Going through those changes as a child and a teenager was hard – probably the hardest thing a teen can experience – but the truth is, at a young age, you still have that bubble of family and strong support that helps you through moments of weakness. As an older woman, one who is now trying to stand on her own two feet in the world, I don’t know if I could muster that strength from within to experience another two or more decades of my skin changing back.

I don’t think I have what it takes to be that strong again.

I don’t want to be a yoyo every twenty years of having my skin decide between completely black and completely white. It took this much to get here. It took this much to accept being at this point. I don’t think I can do it again.

So, would I like my original colour back? Yes, I would love to know what it feels like to look like I would have without my Vitiligo. But do I want my original colour to come back now? No. As strong as I may have been going through that transition, it was a strength that took a lot out of both me and my family. Looking back on it, I don’t remember how I got through it, all I know is that I did.

I am not a white woman by definition, nor do I believe that being white is better in any way, but I have adapted to make my situation work for me. If I had remained with patches, I would have adapted to make that work for me also, the way so many of you do. Either way, I would adapt. But I don’t think I would have the strength to do it again. When one of my “freckles” or “beauty moles”, as I like to call them, starts to grow, or a new one appears, I get very anxious. I would never try to bleach them (knowing what bleaching entails following a particular incident in 2008), but I do get scared that it might be happening all over again. The irony of course being that it is still happening now because I never stopped being a Vitiligo sufferer! I still have Vitiligo, which people tend to forget!

And this is why I have so much respect and admiration for those of you who still go through having your patches in today’s world and holding your head high. I don’t know if I could. I remember that at some point I did it, I must have done to reach this day, but I doubt whether I could find that inner strength once again for the reversal. It’s taking enough inner strength to live with a completely different skin colour that isn’t even my own…

The Scars That We Bear...

I have always been fascinated by scars. Strange as this may sound, I was always convinced that anyone with an impressive-looking scar must therefore have an impressive story to tell about how they got it. I always felt that people with scars had LIVED, they had taken risks and gone on wild adventures and lived to tell the tale. Perhaps it was because my own skin did not scar so easily that I was fascinated by this phenomenon.  The very few scars that my skin has managed to bear are, in a very weird way, badges of pride for me because I envy people with really impressive scars and my own scars are reminders of important things that happened in my life.

My god sister came as a blessing and a miracle during my teenage years. We were unsure she would survive to full term and though she was born prematurely, she was indeed a little fighter. As a result of her early arrival, she was placed in an incubator where subsequently a number of medical mistakes caused her to lose her vision in one eye, as well as a drip being left in her arm for too long causing an intravenous burn, creating a considerable scar from her left wrist to her elbow. Nevertheless, she pulled through and I was so proud to be her god sister that I carried her picture on my folder at school and told everyone about the adorable little baby adorning the cover.

Some years ago, when she was at the tender age of four or five, when we were sitting in the car on our way to the movies, I commented that the scar on her arm was looking as if it was fading or getting smaller. She then replied:

“Yes, that’s my scar. I don’t like it because it makes me ugly.”

It broke my heart to hear such a young child say something so awful about themselves that I couldn’t think of what to say. Thinking of how that scar symbolized her fight to survive, in the end I settled for:

“Don’t say that, scars are beautiful! Your scar means that you have a really interesting story to tell everybody when they ask you what it is! I’m sure there’s no one in your class who has a scar like yours or a story like yours… Your scar makes you so special and it’s there to remind you of how special you are…”

She looked at me with her big, innocent eyes and asked me:

“Well, if you like scars so much and they are so special, where’s your scar?”

The question caught me off guard and got me thinking. Where was my scar? Then it dawned on me that my skin was my scar and my skin was my story. Maybe to the rest of the world they could not see a scar in the traditional sense, but the visible part that the world encountered upon meeting me was not as it originally had been. And if I was trying to convince this young, impressionable child that her scar was one of the most beautiful things about her, then I should accept that my scar was one of the most beautiful things about me.

And it is true. For those of us whose skin is changing, or is different to how it was when we were born, we have to see these scars as stories to share with the world about how special we truly are and what we have survived. Scars are amazing, they set us apart from each other and show that we are still human – we still cut, we still bleed, we still hurt… and we still heal. And when we heal, we share our story which can help someone else to heal or feel better about their own scars. Telling my god sister how beautiful both she and her scar were that day helped me to accept my own in some small way. < Having a scar means that you lived to tell the tale. Having a scar means that you survived the fall, you survived the ordeal and you survived the injury that led to you having that scar in the first place. Having a scar to talk about means that you are still alive to talk about it. And for that, scars are beautiful…

Happy birthday to my miracle god sister… Without even knowing it, you opened my eyes with a few simple words.

The Michael Jackson Thing...

In much of the interviews, public speaking or media that I have been fortunate to be a part of since August, I cannot remember any occasion when Michael Jackson was not mentioned at some point or another. Since August, many people ask me questions about MJ, and though I have never had the honour of meeting him or attending one of his concerts, I most certainly always felt that I had a connection to him, indeed via his music as did many of us (I owe my love of dance to him), but more importantly through our shared experiences of living with Vitiligo.

Aged 18 - Dancing a Michael Jackson Tribute at my finale dance show before leaving for university

Granted, my journey has not been entirely the same as his and I am not here to discuss any other aspect of his life other than his Vitiligo nor am I going to discuss whether he bleached his skin or not as I firmly believe that if he DID bleach his skin, it was because of his Vitiligo and NOT because he wanted to be a white man. This notion in itself is completely ridiculous and were it true, there would be a vast amount of people trying to achieve, or achieving (if it's indeed possible) the exact same thing in today's world that we would have heard of by now... Just to be clear, there are a great deal of people, mainly women, who attempt to bleach or lighten their skin in Asian countries as well as West Indian countries and the effects are devastating. It is impossible to achieve an even tone of white that is that many shades lighter than your original skin tone; one's skin tone may even out through lightening creams, it may even lighten a shade or two, but let's be realistic: Michael Jackson did not bleach his skin in order to become a white man.

I was offered the option to depigment the remainder of my dark skin patches once my skin was 80% white. This was after trying a number of treatments to try and bring back my original skin colour. The word that rang in my ears with the depigmentation option however, is one I will never forget:

IRREVERSIBLE.

At the age of twelve and on the brink of puberty, I did not then and still do not now believe that I was old enough, mature enough or responsible enough to make that kind of decision. Furthermore, knowing that Michael Jackson is the prime example to come to mind when something like this is put on the table, I think subconsciously I knew what this would mean for me as well. It wasn't just about getting rid of patchy skin to look somewhat 'normal'. This was about changing my ENTIRE IDENTITY - ethnic, racial and cultural. I was no Michael Jackson, but people in society are just as judgmental of each other as they are of those A-listers. I knew, judging from what he must have had to go through, that if I ever chose to bleach the remainder of my skin, that I would be judged for it by people who did not even know me.

Well, isn't it ironic that my skin decided to depigment itself in the end, bleach or no bleach? This doesn't happen to the majority of people with Vitiligo. I am not the first person to completely and naturally change from black to white (thanks to this year's experience, I have since met three other individuals like myself), and I doubt I will be the last, but it is rare enough to be a pretty amazing thing - Amazing to experience as well as to hear about for you I am sure.

Frightening as hell. Even today.

When my story came to light, there were many (I mean MANY) different opinions voiced. Most of the responses I received or read were incredibly positive and uplifting and very very supportive. And then there were the others:

"It would seem she became white from head to toe - even her hair straightened out for the picture in the papers!" (Well then I guess I shouldn't say anything about women who consistently go to ridiculous lengths to put weaves or hair extensions in their hair to get luxuriously straight locks... I never thought that blowdrying [not chemically straightening, like other women do] my naturally mixed race hair would have been an issue for people...)

"She has been disowned by the black community, the association of which I am the President... She is not one of us... Who is joining me?"

"She would never be accepted by white people - her high forehead, broad nose and flared nostrils prove that she is not white..."

"She is missing the frontal lobe that would ever make her a white woman..."

"This girl is a RACIST" (after I was misquoted on a website in a different language as having said that I was lucky to now be white... What I had said was that I was fortunate that my skin changed to one colour so that at least I could assume some sort of normalcy especially during my social years)

On the one hand, this makes me laugh... Me, a racist?! My roots are Dutch, Creole, Portuguese, British and Indian; I was born in Trinidad & Tobago but raised in Israel, Syria and Cyprus; I speak four languages and my best friends are Greek/Swiss, Mauritian, Lebanese, Ukrainian and British whose religions range from Muslim to Atheist, Greek or Russian Orthodox and Roman Catholic and this was NEVER a problem for us during our years of friendship... And I'm racist because of a skin condition I have no control over?!

Ignorance is really a mysterious thing. Upon reading these comments, you can only imagine how I felt. So I stopped reading. None of this had anything to do with my story, none of this had anything to do with what I had revealed. If people who did not know me could say this about me within 24 hours of the story being on the Internet, I could only imagine what it felt like for the world's greatest entertainer who had been in the spotlight his entire life.

However, more recently, I was sent a link to my bit on the Today Show for MSNBC that had been posted up on YouTube and  what was really interesting to read was the ongoing discussion in the comments section below the video... And of course, the discussion turned to Michael Jackson - did he or didn't he?

But the issue that really made me want to write this post was a host of questions that kept popping up:

• Why didn't the media show this before? 
• Why is this girl only coming out now that Michael Jackson is dead? 
• Where was she all this time? 
• Why was this not made a bigger issue during his lifetime?

First of all, "this girl" has always existed, and I have always had Vitiligo. Whether or not anyone chose to bring this to the media or not was never my concern. The problem with society is that most of the time we are ignorant to what is happening around us. People with Vitiligo have always been around, they walk past you every day, but many people never noticed until they read my story and became aware of it.

Furthermore, it has only been six years since I turned completely white. Before that, my skin was patchy like any other Vitiligo sufferer. So once again, where was I all this time? I was trying to live like a normal teenager on a Greek island in the Mediterranean... where were you?

Why am I only coming out now that Michael Jackson is dead? Correction - I am not "coming out" anywhere to anyone. I have always been out there, it was just up to society to notice me (as well as other people wtih visible skin conditions) for me and not for my skin. I had no desire to personally contact any newspaper or TV station to tell them about myself; I was contacted... I don't believe that I am any different to all of the other skin disease sufferers out there so why would I expect to be noticed rather than someone else?

The interview for the story that appeared in the newspapers about me actually took place at the end of May/beginning of June 2009, long before Michael Jackson's passing, and was only meant to be featured in a small column in the health section. I will stand up for the media in this one instance for using the opportunity of Michael Jackson's untimely and unfortunate death to make this story a lot bigger than it was going to be. Had it not then become a double page spread because of the link to Michael Jackson's own Vitiligo, then so many people (and so many of you) would still be oblivious to the devastation that Vitiligo can cause, because so many people would still not know anything about it. This is the one time I would say that in taking advantage of a situation or opportunity, the media actually has helped to make a positive difference, both in my life and in the lives of many others who now feel like they have a voice and not just a skin condition that makes them different.

I hope that I have cleared up that little misunderstanding - I did not seek to make myself public because of Michael Jackson's passing, my story was being documented long before that. I've been called Michael Jackson for years (according to one person "the resemblance is certainly there!")... It just so happened that what was going to be a small writeup that most people would have probably skimmed past at any other time, became a much bigger deal because it had links to such a huge star like Michael Jackson, who passed away as my interview was being processed.

One more comment I'd like to share with you that was written following my NBC interview, and I'm glad it was made:

"I guess the world really does owe Michael Jackson an apology for what we as a society put him through."

May he truly find some peace now.

Your Skin and the Sun...

Before getting into the more personal aspects of what living with Vitiligo has been like, I would like to use this post to answer a few of the more practical questions that have been sent to me regarding my skin, first and foremost being of course - SKIN CARE.

Do you really wear SPF 100 every day?

No. It depends on the length of time I plan to be in the sun, how active I intend on being whilst exposing my skin to the sun and also the daily weather forecast. I generally wear makeup that contains SPF (ranging from 15 to 30) in it, which protects my face and neck. I also sometimes have a fringe (or bangs as it is called in the West) which can help protect my face from the sun, or make a style statement by wearing hats, scarves or sunglasses... There's no reason why we cannot have fun whilst protecting our skin...

I wear protection on my arms, chest and shoulders if I am going to be exposed to the sun frequently during the day e.g. when out shopping, hanging out in the park or when I was in the playground back in my school days and we were not allowed to stay in the classrooms at break time. This only needs to be about SPF 30 if I am switching between being inside and outside often, but common sense dictates that even when outside, I try to walk or sit in the shade.

SPF 100 is what I use MOST DEFINITELY when I will be spending a hot afternoon outdoors at a BBQ or in the park or a day at the beach, which in any case is a rare thing for me (despite being an island girl!). The sun's rays are most harmful during the hours in which people tend to visit the beach (mid- to early afternoon), so I try myself to go either very early in the morning or later on in the afternoon (after 3pm) when the sun will not be as strong. Of course, this is sometimes inconvenient for everyone else in the group wanting to sunbathe etc. so I will wear a T-shirt sometimes as well as my SPF100, swim for shorter periods of time, as the water reflects the sunlight, and reapply sunblock often. Once again, it never hurts to wear a hat and/or sunglasses whenever you can.

Like I said, there is no reason to not look good whilst protecting your skin. I have acquired a number of cardigans, scarves and light jackets to carry with me when out and about, perhaps when I may not have any more sunblock or sometimes don't wish to have the hassle of constantly having to reapply. There are a lot of stylish coverup options available that are in light, breathable fabrics that won't be bothersome on a hot day.

How does your skin react in the sun without protection?

When I was nine years old, having never really protected my skin whilst it was dark, we had a serious wakeup call after a long day at the beach in Trinidad. By this point, my skin was now completely patchy with both dark and white patches all over my body due to the Vitiligo. I got sunburn and sunstroke and woke up the next day with water-filled blisters from head to toe. My skin was so sensitive to movement because of the blistering (the breeze blowing on it, an insect flying past etc.) that every morning for almost two weeks I would sit in a bathtub filled with cool water for hours on end every morning when I woke up. I looked like I had been burnt in a fire and the burn was verbally compared to first or second degree fire burns by my doctor, who actually could not find a suitable place to inject me for a booster shot I was due to have.

After about a week the blisters started bursting and deflating, after which my skin was sore and red all over from the sunburn, and then of course after some time, my skin started peeling. This experience was enough to ensure that any time spent in the sun, especially at the beach, meant that I HAD to be fully protected.

A mild day of sun, where I may be shopping or running errands, will leave me sunkissed and slightly pink without any protection. As mentioned before, I try to spend as much time in the shade as possible if I have to be outside without sunblock, or I carry a light jacket to wear when I can't avoid the sun.

Having Vitiligo means your skin does not have the protection it would normally have, whether you have a single patch or many patches, it is YOUR RESPONSIBILITY to ensure that you have a way of protecting your skin. There is a greater risk for skin cancer and this is no joke. Sunblock can be smelly, it can also be inconvenient or irritating to have to constantly reapply, I totally empathise with this and will admit that I am not always willing to be as responsible as I should with sunblock... However, I have stressed that there are other ways to protect yourself. If your patches are on your face and neck, try using makeup or a moisturiser with SPF content to provide some protection. I currently use MAC makeup which has proven to be very effective, however, anything that provides a barrier between your skin and the sun should work (especially if it is waterproof which will protect against swimming and/or perspiring during the day!)

Remember that your lips may also have lost pigment. Moisturise, moisturise, moisturise! And make sure your lip balm or lipstick of choice also provides sun protection. Most of them do nowadays.

Please note that skin protection is VITAL for ALL SKIN TYPES and ALL RACES, even if darker skin tones are naturally more protected, this does not matter in the long run. EVERYONE is prone to sun damage and even skin cancer, so regardless of whether you have Vitiligo or not, be aware of your skin's relationship to the sun.

Allow me to introduce myself...

A few months ago, my life was a little bit of this and a little bit of that, living it to the best of my ability and yet, like every other human being should be, getting frustrated at the world and at myself for not being able to do more, say more and be more.

A few weeks ago my story living with the skin condition Vitiligo came to light and the response worldwide was overwhelming within a few hours of publishing in the newspapers and online - I never expected it. The recent death and turbulent life of Michael Jackson, who once said that he had Vitiligo, made this story even more publicized due to the fact that I have changed from having dark skin to now being completely white, proving that it is indeed possible.

I am still dealing with the snowball effect of the past few weeks. Overwhelming does not begin to describe the path that I have now been put on, in terms of phone calls, interviews and messages of support (but not always) which have been coming from every corner of the globe. For me, this was unexpected. I have lived with this condition since the age of five, I am now 23 years old. This is my version of "normal". This is my every day.

I have realized that to others, however, this is more than unusual, and for some, it could be a means of support. Following my most recent interview on the NBC's Today Show, as well as the Inside Edition on CBS, the amount of emails and messages I have received from other sufferers of Vitiligo, whether to offer support or to ask various questions about coping with the condition, has pushed me to start this blog as a way of responding to you and hopefully connecting you to each other.

Growing up, I had no one within my age group who had Vitiligo to help me with my condition. It was all on my parents to improvise and I think they have done a fantastic job, considering what they had to work with. They have given me, throughout my life, the confidence to now go ahead and do what it takes to bring whatever awareness I can by sharing my story. I hope this blog can help you, and please believe that the entire experience has been very cathartic for me in raising some past demons and dealing with them, even if it is years down the line.

I don't have all the answers. I'm not sure I have any of the answers. The most I can do is share my own experiences and leave it for you to discuss. Each new blog will share a story, a situation or a lesson that I went through during my time with Vitiligo. If any one of these stories helps someone in any way, whether you have Vitiligo or not, then I believe I have achieved something.

My name is Darcel de Vlugt. I am a Trinidadian woman of mixed heritage who was born with dark skin. My skin is now completely white due to the skin pigmentation disorder known as Vitiligo.

Welcome to my world...