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

I'm 21 this year had vitiligo since last year. Been using vitiligo organic but no significant effect

quite stressful since it happen on my face ... been trying to be happy but well it kinda hard when people look at you ...oh well

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

<< nah I'm not crying lol *serius* but seriously I just wan to smack people who make fun of me =="

I'm from Kuantan ..well only been to the government hospital ..they just gave me the hydrocortisone .... which I havent used it anymore ..since it spread more If i were to use it =="

well I bought those natural vitaligo oil from Aus for around RM500 ....my family say it does lessen abit ..but applying oil in the face is kinda I dun really know how to explain but I hate it lol

is it curable?

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

---

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

how much would the eximer laser cost ?

Can return normal ..but the treatment itself is not reliable ..some post good result ..some are not ...thus had to gamble with all these expensive treatment

---

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 =)

---

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

Hi there. I had a vitiligo since i was 17 and now im 26. The patches appeared on my back and my hand. Its really embarrasing you know. The laser surgery can really make my skin look normal? Gosh, i wish there is a cure for this disease

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 =)

---

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


Attached thumbnail(s)

The seller



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


Attached thumbnail(s)

eye protector while using the uvb lamp

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


Attached thumbnail(s)

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

How to use that thing? Its on my back. I cant reach it.

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....


Attached thumbnail(s)

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 =)

---

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

---

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

have anyone of you try anti vitiligo oil? Is it working? And since the laser treatment only available in Taiwan, I can't go there every month to do the treatment. I just came back from overseas after a month and my mom told me that my back getting really worst. Now, I just bought a Dr Rozmey product, DR 11 cause i read that one of the guy got psoriasis and after he try that product, his skin looks normal. If it's okay, then probably i would recommend it to you guys.

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 ...

---

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

Yup my doctor did mention something about nerve coz my vitiligo only affecting left part of my face. Did not spread to the right.

How much did u buy the lamp bro?