I am a vitiligo patient ( chinese malaysia) since 19 , i am 24 years old now , had been living with this disease for 5 years.

Vitiligo is a a condition that causes depigmentation of sections of skin. It occurs when melanocytes, the cells responsible for skin pigmentation, die or are unable to function





I had been using UVB phototherapy + apply cortisone cream (for the body vitiligo,it is a type of steroid cream given by doctor that help to suppress the antibody so it will arrest the antibody to continue to kill the melanin) + protopic cream ( for the face vitiligo)


Vitiligo patient might be traumatized as this will affect your social life and stigmatization is what vitiligo patient will face. I had gone through these and still will feel bad if the vitiligo spread. Vitiligo patient may even find a hard time to find partner as it is hard for the society to accept it.

The purpose of this forum is to support vitiligo patient where we can share the information of treatment to each other , and to support each other emotionally, as i can totally understand what you are going through.

As for the purpose , i had also created A FACEBOOK GROUP NAMED "VITILIGO BOND MALAYSIA", this is to be more closer to the life of VITILIGO PATIENT, we had been there , experience the same, go through the pain and sorrow , and we wanna let you know that , we UNDERSTAND YOU ...and support you to continue to live with this disfiguring disease and dont let it limit you...

Just search in fb for vitiligo bond malaysia and i will approve shortly..
https://www.facebook.com/groups/417865751609854/

For the treatment part , as far as i know , currently the most easily avalaible treatment is the UVB therapy, for skin patches that is still new, then after one week repigmentation may occurs, but it requires a lot of patience as you need to do the therapy everyday, i had one handheld UVB therapy device so i can do it at home everyday . I bought this from ebay with the advice of a skin specialist.


However, for skin patches that are more than 3 years , it might need consistence phototherapy for months till you can see changes, so the whole point is dont give up. At the same time , i also apply the steroid cream (cortisone+protopic) that is given by doctor , it will help in ur repigmentation and prevent the white patches from spreading.


At the moment , i will say the fastest way to re-pigment is this new type of laser in taiwan, http://www.youtube.com/watch?v=0QzOXJ2_fhk, you can watch this video from you tube.


and also might wanna try this cream out http://www.ebay.com/itm/Melagenina-PLUS-Vi...=item4cfeef7b44 , but i think there is other sellers that sell cheaper.


I myself is going through some painful moment to deal with this. Hope we can lift our head high and live our life! supporting each other =)


You can PM me if u can shy to use ur existing account to connect with me

This post has been edited by fight for life: Sep 17 2012, 09:32 PM

yea i know how it is feel cause my vitiligo just spread to my face ....

i had many nights crying in my room

anyway ,is there any skin specialist nearby? if not i can recommend a few around selangor or ipoh....and also home therapy using UVB ...

i buy using ebay http://www.ebay.com.my/sch/bonchbruevich/m...=&_trksid=p3686 from this seller , from russia - Member id bonchbruevich


Hope it will help you

Hydrocortisone is steroid , it suppose to prevent it from spreading ...hmm dunno for ur case , but my advice is DONNT go under the sun , actually i am quite a stable vitiligo patient but going under the sun cause it to spread.


dont know whether the oil helps anot ...yea i also dont like apply oil in face, the most effective treatment now is Excimer Laser

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Added on March 3, 2012, 1:56 amIt cant be cured, we can only treat and live with it lo ..

This post has been edited by fight for life: Mar 3 2012, 01:56 AM

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Added on March 3, 2012, 10:40 pmerm i never been to laser before , but i did phone to the specialist and ask, normally is around hundred something per session. Usually takes 2 sessions or more to repigment ur skin , but then it depends on ur reponse to the treatment also , diff ppl diff respond ...

but then i really recommend the UVB therapy , which i am using now, need to expose to the light treatment around 2-4 mins per day , then the pigment will slowly fill in. Need patient lo


UVB light treatment -if it is a new patches, few days can see the result , if old patches , need to be persistent for months to see the result =)

i can snap a photo of my uvb lamp to let u see if u want =)

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Added on March 3, 2012, 10:57 pmI had read in the vitiligo patient support forum , that taking vit b12 and folic acid can prevent the patches from spreading =)

I just went to shopping today ....got some in the pharmacy , its 7 ringgit for 10 tablets of b12 , then rm6 ringgit for folic acid (100 tablets) ..i got them at the caring pharmacy =) ......

I usually will refer to info and feedback from forum
http://vitiligoforum.com/

and also this http://www.vitiligosupport.org/


There is still hope. need to patiently do the treatment , hardworking and perseverance =)

This post has been edited by fight for life: Mar 3 2012, 10:57 PM

yea i understand that , people will ask me what it is , at first i try to hide and said it is allergic then cannot hide anymore , i just tell the truth and said i got depigmentation problem.

At first , ppl might avoid, but when they get use to it, it is just ok...just ignore those who give u harsh comment , everybody is created by God, we are just a little bit special than the rest.

Cure - right now only have treatment to make the pigment to grow back. I consider myself lucky if to look at cancer patient where their hair drop and cannot eat and drink...Scientist still undergoing research and find cures. This disease is getting more common nowadays where the statistics show there is 1 out of hundred will get it.


Cheerz! i will find out which clinic that provide excimer laser soon and will provide the info here. we are here to help out each other =)

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Added on March 4, 2012, 12:55 pmMay i know where u got the vitiligo oil and how much yea? I wont mind trying , if it works ...who knows it might work for me, if not just treat it as moisturiser lo

Thank you

This post has been edited by fight for life: Mar 4 2012, 12:55 PM

This is the vitiligo machine that i bought , been using for a year now



This post has been edited by fight for life: Mar 4 2012, 01:15 PM


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The seller



This post has been edited by fight for life: Mar 4 2012, 01:52 PM


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eye protector while using the uvb lamp

This post has been edited by fight for life: Mar 4 2012, 02:50 PM


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the uvb lamp had built in timer so u just set how many minutes u want

can reach one , i got vitiligo at my back also , use mirror, but the best is there is someone who willing to help u to hold , per spot is 3 mins for the body and 1 mins for the face...

I also got vitiligo on my back , but not a lot, already repigmented... i agak agak the place then i postition the uvb lamp to my back lo....


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Here is the video that teach you how to use , just set the timer then press start .....
aiks the you tube preview didnt come out ..i just post the link here la
http://www.youtube.com/watch?v=v2sp9jlJxKM...player_embedded

More details refer here..
http://www.ebay.com.my/itm/Psoriasis-Lamp-...=item2c5e59f582

Anyway , hope it helps you =)

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Added on March 5, 2012, 1:25 pmGUYS , read this , scientist did a research about folic acid and b12 which can help the vitiligo repigmentation
http://www.ncbi.nlm.nih.gov/pubmed/9394983

but need to take them for long term.

wanna ask , anyone of u are vegetarian? cause i suspect vitiligo also related to some deficiency in vitamin, and also do u guys have nerve probelm?

Doctor say it may due to nerve, and b12 will help the nerve

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Added on March 5, 2012, 2:01 pmsorry to spam cause i found new info again
http://nvfi.org/pages/info_vitamins.php
this source is from the national vitiligo foundcation inc.

This post has been edited by fight for life: Mar 5 2012, 02:01 PM

sure sure u try first , if it is working then u tell us ...i think the excimer laser is not available in malaysia cause the machine is a quarter million , today i went to Dr.Koh in PJ uptown and ask him about this ..so even there is this laser in malaysia it might be very very expensive per treatment...

stress can trigger vitiligo to spread, friend dont work too hard ...

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Added on April 3, 2012, 7:23 pmanyway i guess the b12 helps ....some patches that doesnt react to the uvb light start to repigment , my fore head and nose got some white patches , now is normal back ! i'm so happy...need to consistent to use

but ur case is hand and the back right ? hand is very hard to treat , it just wont repigment , anyway , wait for ur review on DR11

This post has been edited by fight for life: Apr 3 2012, 07:23 PM

u mean the cream effective or sun tanning effective ? if i dont go sun tan then use the uvb light only can ?

so ur first visit to assunta how much they charge you ? subsequent visit is rm 100 to 200 right ,according to ur reply earlier ~

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Added on July 14, 2012, 12:40 pmbetter dont simply expose to sunlight , i mean sunlight at different time is different ,b4 10 am the sunlight is ok , after that is not ok

my personal experience with sunlight is that everytime i exposed to sunlight already , like go to the beach or blah blah , my vitiligo will spread ~

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Added on July 14, 2012, 1:05 pmafter converted to MYR, it is approximately rm 900 plus ~

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Added on July 14, 2012, 1:06 pmwent to Dr Koh in Pj uptown, he gave me this cream called elomet, was effective and my vitiligo around my lips gone , but 2 months later it came back, it is me too stress or what~

This post has been edited by fight for life: Jul 14 2012, 01:06 PM

yea , what pills is that ? so now the white patches are gone ?

oh how long already the vitiligo ? do the meladinine works?

Have you all ever try injection? my doctor inject some medicine to the white spot , one week already , he asked me go back follow up

i had got my melagenina plus , originated from Cuba , quite famous , if u google it for information , it had 86% success rate , i'm gonna try it , but still UVB light never fail me (for the white spot on the face) , but white spot hand and leg is hard to get rid off

will update you all about my try!!!

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Added on July 24, 2012, 10:59 pmi heard about ginkgo biloba is good for vitiligo ! but is yet to try

had you heard of the pepper extract , peperine ? is not in market yet , is under study still ~ i hope this new drug will faster be avalaible http://www.dailyglow.com/blogs/skin-and-ha...ome-from-pepper

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Added on July 24, 2012, 11:00 pmis the anti vitiligo oil working ?

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Added on July 24, 2012, 11:03 pmyea protopic is for the face , but the cortisone will work better for the body. i had been using these cream for years , and protopic will have burning sensation esp if u apply on the eyelid, if ur patches will be gone by these treatment then very good oh~ cause only new patches will respond but if the patches is quite some time already , it wont respond well already

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Added on July 24, 2012, 11:07 pmserious ? the long term topical steroid use will have systemic effect ? i had been using for years ! what is topical pimecrolimus?

This post has been edited by fight for life: Jul 24 2012, 11:07 PM

plan to go visit dr ranjit too, eh u claim insurance ah? saw ur post when i research about dr ranjit , how to claim wo? insurance usually put it under comestic wo , can i pm you regarding the insurance ?

protopic is effective when the lesion is on the early stage ..it is to stimulate back the cell la



This post has been edited by fight for life: Aug 24 2012, 11:08 PM

anyone heard about national skin centre before ? it is in SIngapore , it had more advance treatment for vitiligo and it is 30 to 70 sing dollar for per excimer laser treatment , consultation fees 50 singapore dollar ( if i not mistaken )

i am considering apply for jobs in singapore just to treat my vitiligo there , here is the link about national skin centre for reference

http://www.nsc.gov.sg/showpage.asp?id=222









additionally

guys , i found this thread , is it trustable ? antivitiligo tablet , creditability a bit questionable
http://www.antivitiligotablets.com/

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Added on August 29, 2012, 9:08 amAnyone fancy a vitiligo patient gathering? U all can add me at fb , pm me so we all can stay connect , we are here to support each other

This post has been edited by fight for life: Aug 29 2012, 09:08 AM

Dear all i am now visiting dr ruban, i think its dr nathan brother according to my assunta friend

Dear all , i got a news for you all

so i had been to dr ranjit clinic , he ask me to take some pill in the morning , then go expose myself to sun after one hour and a half of taking that pill

It might worked , but it caused me heartburn everytime i took it so i give up on it

and stop trying to repigment the hands, it wont work , just making it more obvious


then lastest attempt is to Dr ruban clinic at damansara heights , he got sell narrowband UVB machine from DERMAPAL
http://www.daavlin.com/patients/photothera...calp-spot-unit/

Price : rm4000 plus per unit ( Dr Ruban got offer easy payment with credit card)
country: USA
Clinic Website: http://www.drruban.com/

and guys if UVB could not help you,
excimer laser is the best technology now
http://gleneagleskl.com.my/find-a-doctor/
Find Dr Gan
I think he is the only Dr in Malaysia with excimer laser
i ask about the treatment fees
roughly around rm200 per treatment excluding consultation fees ( around rm150)


so you all can make your move to get the treatment