Tuesday, June 16, 2009

My Vitiligo

My Vitiligo Story

I started having Vitiligo when I was 15, studying abroad in Australia.
I think it's the sudden change in diet (too much meat and dairy) ,
adapting to a different temperature (4 season and maybe not enough sun exposure) ,
and the stress of adapting in a new country that triggered my Vitiligo.
Plus, my vitiligo is genetic, my aunt has it on her back and my cousin has it on his calf.
But theirs are only a small barely noticeable patch and theirs don't spread at all.
and out of the whole family of around 23 people or more, (I've lost count :P) we are the only 3 person in the family with Vitiligo.
While me, it's on my face and some tiny portion on my scalp (thus white hair) and it spreads when I'm stressed.

You've gotta find out what causes your Vitiligo.
For me, it's genetic, and triggered by stress.
I've done my blood check and everything looks good.
I don't have a thyroid problem either.
So I'm fixing it by changing my diet to get more nutrients to my body and simply by being unstressed & happy.
Sounds simple right ?
And it's kinda cool when you think about it, I have a stress level indicator right on my face.
hooo yeahh....

My experience with Dermatologist and My treatments.

Ok, this is a long one.
First of all, Don't be a pessimist.
What works for me, might not work for you and What works for you might not work for me.
Do the Treatments that you think is right and safe for you and keep asking around / Researching.
Use the Internet, I've found a lot of useful information and support groups there.
Get a good dermatologist.

You don't have to read the whole thing,
just scroll down to the bottom of the page and find the word "SHORTCUT" in this article to read a brief synopsis of it hohoho :)


Australia (around 1996)
I started seeing a white-ish area on my face, kinda fade.
So I went to see a regular Doctor and she gave me a anti-fungal cream !!!
paid AUD$27
Anyway, I didn't know what it was, so I used the cream on my face everyday for 2 weeks.
When I went back to see her, she decided that it's not caused by Fungus and referred me to a Dermatologist. paid another AUD$27
So I went to see a Dermatologist, he only touched my face for 2 seconds and told me it's called Vitiligo and it's incurable.
But to be thorough he told me to have a blood check, to see if it has anything to do with my Thyroid function, and he told me that to come see him for another appointment after the blood result is out.
I told him I'll be going home at the end of the year (I was a foreign student in Australia), so he promised to see me before the end of the year.
And he added "You can get a cover-up creme at a beautician down the road"
I then Paid AUD$ 80 for that !!!
So I went to have a blood check at a nearby hospital, paid for it and the Results was sent directly to the dermatologists office.
Then he called me, I think it was his secretary / receptionist, and she said the results were all good.
and when I asked when I can have another appointment , she said he's all booked up till the end of the year. Ha ha.... very polite indeed.
There was nothing i could do, I didn't know what to say to that so I said ok, thank you and hung up.
I was left hanging.
I was 16 years old and living in a dorm at that time, so the housemistress knew about me and she asked me about my appointment and when I told her about it, she got annoyed and called the dermatologist office and insisted that the Dermatologist meet me for an appointment.
And the Dermatologist said he could see me at 7 am, before his practice starts.
I'm thankful that my housemistress was concerned about me but of course I didn't go.
What ? to go there at 7 am, just for him to tell me that there's nothing to be done to cure my Vitiligo and pay another AUD$80 ?? No thank you.

Singapore (around 1997)
I was referred to this dermatologist by a friend who uses his product for her facial problems
(acne and pores and breakouts and redness, etc)
My friend said this is a very popular dermatologist and his stuff works on my friend.
So I went there, the place is kinda old and, well it's just old.
And He didn't explain much about Vitiligo, he said it's cureable, and started writing prescriptions to be purchased at his pharmacy counter just outside the door.
The prescription consisted skin treatment products for my face, and since my vitiligo is on my face, it consists of facial wash, facial moisturizer, facial sunblock.
and it turns out they were the same facial products that my friend was using.
So the dermatologist was basically selling his own beauty products, but he explained that the facial treatments are essential in curing my Vitiligo.
and some capsules, called something I can't remember, it was expensive.
and I told my dad to buy just half of the recommended capsule prescriptions first, have a try and see what happens, but my dad insisted on buying the whole thing.
So we did. Tried it for a while, nothing changed, but my skin was softer from all the beauty product though.
And when we asked another pharmacist about the capsules, and he said it's used to treat kidney.
It's usually prescribed to patients who just had a kidney operations.
Jaws dropped, I just stopped taking the capsules.
I don't know, maybe he wanted to cleanse my kidney ? Does it have anything to do with Vitiligo ?
Didn't he have to know my blood results first or something like that ?

I went to this super famous Dermatologist, super crowded.
He introduced me to PUVA treatment.
Didn't explain a lot , probably coz there were gazillions of other patients waiting outside.
So the PUVA treatment is Psoralen+UVA light, where I take one Meladinin tablet, two hours before exposing the Vitiligo-affected area to the sun for 15 minutes, which must be done daily between 10am - 3pm.
He told me to avoid Vitamin C and since I have some white hair due to Vitiligo, he told me usually white hair can't regain its pigment.
(Why do I call it white hair ? coz it's white not grey/gray :P )
After a few weeks, I started regaining pigments. But some white patches remain the same.
And I notice that the sun is way to bright for my eyes, I just thought that I was spending too much time inside.
So after a month or more, I went back to see him and to check on my condition and ask about the-sun-is-too-bright thing.
He said, "yes of course the sun is too bright, because you're taking the meladinin, you are now more sensitive to sunlight, you should protect your eyes, wear sunglasses always."
Hello doc, I wished you could've told me that from the beginning.
And since some part of the Vitiligo on my face wasn't improving, he offered skin grafting.
But I refused.
And I asked whether I could add herbal supplements or other traditional treatments to treat my Vitiligo and he said it's up to me, but he's not responsible for anything if I combine his treatment and the traditional treatments.
ps. PUVA treatment might cause sunburn to people with pale sensitive skin, so always ask your
Dermatologist about any side effects.

Then I started researching on the internet,
and I found Eric Fricker's website which was really useful and helpful and inspirational.
then I started Juicing, eating healthily, Sunbathing, taking Supplements.
(Cal,Mag,Zinc - Bcomplex - St. John's Wort - etc)
Seriously, go to his website, it has a lot of information there.
Emily's Vitiligo by Eric Fricker

So since I've stopped using the PUVA treatment,
coz it's not doing anything for me anymore and my eyes are getting to sensitive to the sun and I just can't be bothered to sunbathe anymore.
My dad suggested that I saw this herbalist.
Went there, lots of patients, and he gave me this concoction of herbs, kinda yellowy, probably he added turmeric there.
He didn't say what's in it, but it has to be boiled and drank twice a day.
But I got nauseas everytime after drinking it, so I stopped after day 3.

Then, my dad, again, Saw quite a lot of advertising on the newspaper,
Traditional medicine, don't know what's in it..... they never tell you anyway.
My parents bought them and asked me if I wanted to try them.
It smelled like alcohol and chinese rubbing liquid for bruises, which smells quite normal for a bruise rubbing liquid. (Chinese bruise wine)
But since I don't know what the content is, and it's home-made, no certification whatsoever,
There's no way I was going to put an unknown liquid on my face.

Another Dermatologist.
He also prescribed a psoralen (PUVA) treatment, but instead of giving me meladinin tablets,
He gave me a liquid version of psoralen, to be applied very thinly on the skin just before sun exposure.
It cause a sunburn, red skin, kinda flaky after a few days.
So because my Vitiligo was near my eye, I didn't continue.

Another Dermatologist suggested skin bleaching.
so I'd be completely pigment-less, kinda like Michael jackson now, he's not black coz he probably choose to destroy all other pigments in order to have an even color skintone.
But I was worried about the risk of getting skin cancer / melanoma.
Not being able to tan means no protection whatsoever on my skin.
So no thank you.

Another Dermatologist.
He offered this Light treatment, it was Red, so it was Infra Red ?
I didn't know what it was.
I went under the Light for a while, can't remember, but I think it was for 2 minutes ? or was it 5 ?
Anyway........ my white patches turned red, got slightly sunburnt.
So I was skeptical and didn't come back for a second visit.

A few dermatologist have in fact suggested skin-grafting, where he takes a melanocytes from another part of my skin, grows it and then plants it to my white patches.
I was of course, uninterested.
Then he show me photos, yes, it worked on "spreading" the pigment on the white skin, but I saw tiny bumps where the melanocytes was planted. So I was afraid that I'd have bumps on my face.
And I was reluctant because I read the skin-grafting offered in the US, must be done in a really sterile environement in a Lab, and I don't trust that this Dermatologist can perform a perfect skin-grafting.
Anyhooo.... dat's just me.

In the meantime, since the first PUVA treatment, my Vitiligo has stopped spreading, but it has also stopped repigmenting, so it's just the same for about 2 years now.

Shenzhen, China
I went there to visit relatives. (I think around year 2000)
My step-Auntie was a Head Doctor at a Heart Hospital there.
okay that wasn't the correct Medical terms, but anyways....
She took me to another hospital which looked like the Biggest Newest Hospital at that time there.
So we went to the Dermatologist waiting room, there were like 15 people there.
The dermatologist wasn't there yet, and then the Dermatologist came and just right when She entered the practice room, All of the patients started walking (almost running) towards the door, including me dragged by my step Auntie.
What ? don't they have a number system ? or to register first ?
Anyway....... so we went in first, since the Dermatologist knew my step-Auntie.
Inside, they talked in Chinese, and they asked me some questions, my vitiligo history.
and she prescribed me some tablets and a liquid.
So we went to buy it in the Hospital's pharmacy downstairs.
I think it's a registered Vitiligo / skin tablet & liquid solution, coz it has the Vitiligo packaging and everything.
Anyway... my step Auntie said they're safe, coz they're made out of natural ingredients and the usual medicinal ingredients.
So I went home and started taking the tablet, and the solution to be applied on my white skin.
It has the same "Chinese Bruise Wine smell"
which I'm familiar with, since my grandparents use to apply it on me when I bruise as a child,
or If you take a Chinese martial arts course and you bruise, then your Master recommends that liquid solution, you know what I mean, it's that familiar smell.
But of course, with a slightly different ingredients for Vitiligo.
My Vitiligo didn't really spread then, and it also didn't repigment, but I didn't really care much about it anyways. I was kinda losing hope that it was gonna ever go away.

I still occasionally Juice , eat healthily, sunbathe without PUVA tablets.
but most of the time, I eat a normal food, basically anything, but I was never too crazy about junk food anyway, so I was relatively eating healthily.

Hyperbaric Oxygen Treatment.
An uncle of mine who had a stroke a few years ago went on a Hyperbaric Oxygen Treatment.
It's like where you go inside this submarine looking thingy and the pressure is set as if you are diving under water.
And you breathe pure Oxygen using an Oxygen mask.
And it's said at that pressure, your body takes more Oxygen and it's healthier.
I think you're inside for 1 hour - 1 hour 30 minutes.
For more thorough explanation and health benefits, go search Hyperbaric Oxygen Treatment on the internet.
And Years ago, where it's rumored that Michael Jackson sleeps in an Oxygen chambers.
He's probably just having a Hyperbaric Treatment and the press just went all crazy about it.
When my uncle was waiting for his session, He overheard someone telling a story that this Lady with Vitligo who has had Hyperbaric O2 Treatment for multiple times, starts repigmenting.
So he told me about it, So I went ahead, sceptical as always, and tried it.
Result, My Vitiligo didn't spread, I sleep easier, my skin was clearer, I looked fresher, but I didn't repigment, probably not yet anyway.
But since it was repetitous, and took a lot of time and was a bit pricey.
I think after about 15 - 20 treatments, I just got bored and i stopped going there.

I then tried useing Liquid PABA, (DMAE H-3 from Twin Lab)
because Wanakeeh , an active member of Vitiligo Forum, used it and it helped her repigment.
I'm supposed to apply it to the skin and go sunbathe.
But I didn't really sunbathe, so the product expired..... It was almost never used.
ohohohoho my bad.

Milan, Italy
Then I went to Milan, (around 2004-2005)
I heard about Ratokderm treatment in Milan, but it was not recommended by friends in the Vitiligo forum.
so I went to this hospital in Milan that offers Fototerapia UVB a banda stretta.
It's basically a UVB narrow band Phototherapy.
Ospedale maggiore di Milano (www.policlinico.mi.it) at Via Pace, Milano
Hey, it's located in Peace street, Milan, how cool is dat :P
So I went there, but I think they gave me a UVA light treatment instead of the UVB,
I can't remember the reason for it.
Anyway.... so they cover my eyes with a rubbery grey thingy and taped it to my face.
Put me in front of a Light box (Like one of those purple lamp light box)
And It only took around 12 seconds.
I did it twice a week, but after a few months, there was no change and I feel it's a waste of time and I stopped going there.
Even a friend in the forum who used to go there said it was a waste of time to go there and sit there for 12 seconds only, so I just sunbathe whenever I can.
But when I was in Milan, I ate everything, didn't sunbathe everyday, and the Vitiligo didn't spread at all, at least not that I noticed.

Paris, France.
I didn't do any treatments, sunbathe every once in a while.
But I was there from spring to summer, so I was getting a lot of sun anyway.
I still eat a lot of fruits, but since I was kinda broke there, I ate a lot of lentils, d'oh right, but I still save some cash to indulge on cakes / desserts / and macaron........ oooooo the Macaron...
Pierre Herme and Laduree.......yummmmmmmmm...............
I was kinda unhappy coz I couldn't take Art classes and more Language classes since I was broke, but I insisted on staying there.
so.......I noticed the Vitiligo spread to my left eyelids.
Probably the Lentils have something to do with it to....but then again, probably not.
So... no more lentils for me, ever again.

Indonesia (around 2007-2008)
the Vitiligo spreads even more,left eyelid and left eyelashes
yes.... my Vitiligo turns out to be triggered by stress.
and some on my fringe / bang, (I have like 4 - 5 white hair there, only there though)
but my mom insisted that it's caused by age.
yea rite, no white hair anywhere else in the whole head, just right there on top of my head, on almost 1 same spot, and she said those white hair are caused by age. d'oh mum.

So....... reading magazines, there was this constant advertising on a new hospital about monochromatic excimer light 308nm (MEL308nm)
Probably the hospital just bought a new equipment recommended by their Dermatologist so they kept on advertising.
So I set up an appointment, and went there.
Actually my mum kept asking me to try it out, so even though I was cynical about it, we went there anyway.
We got to the waiting room, asked some of the other patients, some said they saw changes after a few treatments, some said they haven't see any changes.
So...........we went in, met with the Dermatologist who explained what Vitiligo is.... bla bla bla boring
and he explained briefly about the equipment and showed some result photos.
He then explained the treatment is in packages which must be paid in advance.
Oh how convenient mister doctor.
I can't remember but I think the package consisted of 12 light treatments, plus a doctor fee for each session.
So we went to another room where the nurse took a photo of my face using a digital camera.
The room wasn't really well lit, but I thought it's the perfect lighting coz she used flash on the camera anyway.
So now the dermatologist went away.......he probably have another schedule in another hospital ?
We (my mum n me) are left with the nurse and the dermatologist's assistant to do the first treatment.
And since I have Vitiligo around my left eye, I can't use the protective metal google because it will cover my white patch, so the doc's assistant (who's also a doctor btw) told me to use a metal cover to be put on my eyeball........ which looked like kinda a small anvil.
well, not exactly not like a small anvil, but it's a concave shaped metal thingy with a tiny handle and it's placed directly on the eyeball..... scary huh ?
Here, it's probably kinda like this, and add a tiny joystick-like-handle on top.
But I refuseddddddd........ noooooo wayyyyyyy
So we decided to cover all my eye area with the metal google.
I was told to lie down so the assistant can see which area on my skin to be exposed to MEL308nm.
then my mum said " how can you see like that, don't you need to use a UV light or something ?"
and only then, the doc's assistant, got his portable purple uv lamp, turned off the lights and started looking at my white patches. What a lazy guy.

After we're set. the nurse applied sunscreen on the "normal" skin of my face, using one of those cheap art brush that you can get in bookstores.
Yes we have to buy the sunscreen, it's not included in the package price nor the doctor's fee.
And then the doc's assistant started the treatment.
The equipment was placed really close to my face and it was on for only 8 seconds or so.
It felt kinda warm, but no sunburn whatsoever.
I still can tell that it was bright, I'm not supposed to sense any light with the google on.
Ohhh welllllllll...............

Second session.
The dermatologist was there, so he insisted that I use the metal eyeball cover, or whatever its name is.
I refused of course, how scary it is to have a metal thing on your eyeball.
So he showed a photo of a kid with good result repigmenting around his eyes.
So.... if a 10 year old can do it, so can I, right ?
And the dermatologist left again, where does he go everytime anyway ?
The doc's assistant placed the metal eyeball cover on my left eyeball.
It's the weirdest uncomfortable feeling ever, it's like a giant cold thingy and I can feel it inside my eyelids coz he told me to shut my eyes after the thing is in. I can't even move !!!
My tears keep on coming out as long as that thing was on my eyeball.
So he took the MEL 308nm equipment and started the light.
I can still tell that it was bright, and the doc's assistant said it was my fault coz my eye was looking at another direction instead of directly looking up to the eyeball cover.
Hello........... I can't even feel my eye, how can I control my eye movement ? All I feel was a big cold thingy and my tears kept coming out.

Third session,
I tried the metal eyeball cover again, but that was the last time.
I wasn't convinced that this treatment might help me repigment anyway.
So we met with the dermatologist twice only. and the rest was with the nurse and the lazy doc's assistant.
Advice : Always Protect your Eyes when doing any Light/Laser Treatment !!!!

Last session,
I was kinda excited coz it's the last one.
I wanted to see the photo comparison, even though at home looking in the mirror I saw no difference.
So when we went there, yes me n my mum again,
There was a substitute dermatologist, coz our dermatologist was at a seminar in Germany and won't be back till next week.
Great !
He didn't say anything about my sessions and he only looked at my Vitiligo which was kinda slightly pinkish because of the MEL light (not sunburnt at all though) and writes in the patient's record journal thingy and told us we can see our dermatologist when he returns the following week.

So............ we did our last session and the nurse took another photo of me, then I asked the nurse to show me the photo comparison.
So she slowly transferred the photos from the digital camera, slowly searched for the appropriate folders in the computer, and we were waiting there and she was moving photos of all of the patients to their appropriate folders. What ? is she crazy ? Couldn't she do it later ? we're in front of her waiting and she's doing that ???
So I asked if I can see my photo comparison, and she looked for my folder, she was kinda annoyed I think.
And when she showed my 2 photos.
It was blurry, the lighting wasn't sufficient, so I can't actually see the white patches clearly on my face.
I knew the photo was taken in a badly lit room..........
So that was it. We never returned there again.
That was a waste of time and money.
Refund and File in complaints ? yeah... I don't think that exists in this country.

I spend lots of times in front of the computer.
And now I feel that my left eye is dryer than my right eye.
and it's kinda harder to focus with my left eye, just so slightly, barely noticeable.
and since vitiligo surrounds my left eye, I was afraid that it's Vitiligo related,
there's research that says it can affect the eye, called VOGT, but let's not go there. (It scares me)

Went to Eye doctor in a very famous Eye Center in a big building.
uummm.... mmmmm..... not sure whether he's an Optometrist or an Ophthalmologist.
I asked him about my left eye and whether there's a possible connection with Vitiligo.
He checked my eyes, saying it's just a bit dry and needs constant lubrication when necessary.
He prescribed an over the counter eyedrops, the one in individual vial to be more sterile.
and told me that I read too much !!
well forgive me for reading o mighty mister Eye doctor.
Then, out of curiousity, my mum asked him about Lasik Eye Surgery and it's risks / side effect.
and he answered "Do you ask a pilot about the risk of flying in an airplane before taking off ?"
What a total a$hole !!!!!!!!

yup I deal with a lot of shitty careless dermatologist and one snobbish eye doctor.
but as I said earlier,
It works for some people, so you gotta choose what you think is safest and it might just work for you.
Don't be a cynical like me. hohohoho.


So after having tried the PUVA treatment in 1997, It helped me repigment a bit,
but after that, my Vitiligo remained the same, but it didn't spread, which was a good thing.
Since then :
I've gone to different Dermatologist,
tried a healthy Vegetarian lifestyle n taking Supplements,
tried treatments such as :
- Liquid PUVA,
- Red-Light treatment (once only, dunno what kinda of light), t
- ried Hyperbaric Oxygen Therapy,
- Chinese Medicine,
- UVA treatment using a LightBox in Milan,
- MEL@308nm (Monochromatic Excimer Light 308nm).

So, in short :
1995 or 1996 I started having Vitiligo
1997, PUVA treatment (Taking meladinin tablet, wait 2 hours, then sun exposure for 15 minutes)
worked best for me, but it didn't cure my vitiligo, only helped repigment some part of the skin then it stopped helping me repigment.
1998 till 2005, with various treatments, but mostly just leaving my Vitiligo alone, my Vitiligo remained the same. (didn't spread but didn't repigment either)
I've been offered skin grafting and skin bleaching by dermatologists and refused them both.
from 2005 till 2009, it started spreading again.
and I noticed that a tiny portion of the white patches on my face, is slightly wrinklier than my normal skin.
It's barely noticeable, I was just looking into too much details there :P but it just goes to show that skin without pigment somehow loses it's protection properties.

So Now.....
I don't want to go to dermatologist anymore.
coz I know what causes my Vitiligo, it spreads more when I'm stressed / unhappy / angry.
The feeling of failure is one of a big No no.
So my solution for now, I'll just eat healthily and be happy.

and yeah, there are a lot of controversy about what to eat or what not to eat.
especially right now, I'm eating Vegan and trying to have as much Fresh Veggies and Fruit.
It all depends on you. always Research

I myself don't take Vitamin C supplement,
except when I'm going to have a flu, then I take Seaquill Bio-Ester C.
I'm not advertising for them, but their tablet/capsule seems to work the best for my and my family.
Just 1 tablet/capsule and I'm well again the next day.
I don't eat lentils anymore. haha
I try to sunbathe every morning, but it takes an effort because I'm not a morning person.
I try to always be happy, relaxed, forgiving, positive, etc etc.
Eating right and Juicing is always good.
Breathing is also good.
Reflexology every once in a while,
Exercising always makes me happy and satisfied afterwards.
Research research research, I find a lot of useful information on the internet.

go to My Daily Do's to find out what I do to cure Vitiligo.