How come u know all these medical term ? i find out Dr Ruban is Dr Nathan Son, yeah , he gave me some injection at my thigh as well , he told me that is steroid so that my immune system wont keep killing my melanin
but he did not tell me name of those though


oh well , but i feel a bit of week and always crave of sweet food , is that a sign ? i dont want to get diabetes

Do you all know the vitiligo program by clinuvel ?
Its really giving positive hope...
they are doing the research on a new drug to cure vitiligo
and the result is promosing


but all the trials and drug test gonna take 2 to 3 years from now
gotta wait

http://www.clinuvel.com/en/scenesse/vitiligo

Guys i also wanna tell that i created a facebook group to support each other of the vitiligo patient in Malaysia '

i think stigmatization can really crushed someone down ,
so i created this facebook group so that we'll know we got each other back
u can search this name "vitiligo bond malaysia" https://www.facebook.com/groups/417865751609854/
dont worry its a closed group , so other ppl cant see what is in it ...'


Hope you guys live life strong everyday !

---

Added on September 18, 2012, 11:46 pmsorry for spamming the wall , cause i got info to share again

http://www.clinuvel.com/en/news/webcasts/w...e-wolgen-part-4

if u know michael jackson and lee thomas, well mj is a well known singer, lee thomas is a well know anchor in US , so both of them having vitiligo

lee thomas was the spokeperson for vitiligo community in US

now he is asking about the new drug developed by the pharmaceutical company :clinuvel , the progress of the new drug and what roles should a vitiligo patient plays

Though we suffer from vitiligo , we are not alone , i am sure there are more vitiligo patients in Malaysia , i just wanna group up and tell the other that we support each other ! and if no one did this , i try tho , starting today to raise the awareness to public about this decease

thought there are unspoken comment , but all the stares and weird look that throw on me .....i think no one should be discriminated ..we are NORMAL ....its time to voice out ...

i need to know ur story, i wish i could gather everyone story, each story of a vitiligo patient ( without real names of course) , and let the society know about us , we are not isolated by the society , we need to create the awareness....

This post has been edited by fight for life: Sep 19 2012, 12:01 AM

DEar all,

remember that i said there is a facebook group ?

and now we have OUR 1ST VITILIGO PATIENT GATHERING IN MALAYSIA !!!




i had print screen the fb group so u all can see it
but OF COURSE I HAD block some privacy information of mine and also other members in the groups
some of the forumers in this topic already join the facebook group,
i hope u all also will join this movement together .



p/s: click to enlarge the picture

and if u still cant see the details clearly,
here is it

"dear all, you are cordially invited to our 1ST vitiligo patient gathering!
we will talk about what we had been through , how we overcome , what works and what do not works for repigmentation and the most importantly to cultivate friendship and the bond between each other

so come and join us !

Time : 6.30pm
Date: 25th OCTOBER (its next thursday !)
Venue: Nature's Vegetarian Restaurant
52, jln ss 14/2 (opposite metropolitan college), subang jaya, malaysia

SEEEEEEEEEEE you there !!!

looking forward to it"
Thank you so much !

This post has been edited by fight for life: Oct 20 2012, 01:25 PM

The gathering was fun ! we talked about everything .....like how we face interview with vitiligo...how we deal with vitiligo at work , which skin doctors to go , how much they charge ! most importantly , it cheers up our days knowing that we are not alone !

thanks dear forumer skumaran24 and also facebook group member for joining and also share a lot about his experience as a vitiligo patient on that day too

hi guys ... how are u all doing , so i tried this item called Vitiligo cover lotion from USA

Okay so this is my review using the vitiligo cover
1.it blends in well with my skintone..it looks natural (except u greedy apply too much at one time lol)
2. One bottle is economical as i.use so little
3. The colour staysssssss ! It trick me to think that i am repigmenting LOL ...even i bath ..even i wash my hand with soap it stay there ...when i wipe my hand dry with towel aft i wash my hand


Cons
1. Need to apply carefully for esp for those smaller white patches cause need to avoid the pigmented skin
2.wont make ur skin look like they dont hv vitiligo but less lesss lesssss obvious definitely

You can check out the before and after pic.






I had shared it over the facebook group as well
https://www.facebook.com/groups/417865751609854/?fref=ts


Attached thumbnail(s)

Dear Choco Cream ,

i dont really trust these kinda online thing cause they are 90 % fraud , if you are staying around in kl i can recommend you a ayuveda clinic in Bangsar , me and another forumer is seeking treatment there.

http://www.samkkya.com.my/

youu may pm me or join this facebook group if you need further information
https://www.facebook.com/groups/417865751609854/?fref=ts (name called vitiligo bond malaysia)

All the info , life stories of the vitiligo patient (we are trying to find out how everybody get the disease too) , you can get the access through the fb group

thanks.


Serving alongside,
JY
founder of Vitiligo Bond Malaysia

This is the description of the vitiligo community group in malaysia called "Vitiligo Bond Malaysia"

https://www.facebook.com/groups/417865751609854/

__________________________________________________________________________________________________________________________________

Vitiligo Bond Malaysia was created on October 2012. The first gathering of the vitiligo patient was on 25th October 2012, Kuala Lumpur.


The vision of this non profit organisation is to create awareness of Malaysian about Vitiligo. We gather all the vitiligo patients to unite them and let our voices to be heard one day . We may start small but we will grow.

This is a place where we share all the treatment reviews and places /clinics that we went to seek treatment, with the power of this vitiligo community , we can strengthen each other , most importantly networking , to know each other and share information.


"gathering weeping soul and put smile on their face again"

Serving alongside of Vitiligo Bond Malaysia,
JY
last updated on 26th November 2012

___________________________________________________________________________________________________________________________________

the first time i went , they charge me rm 155 include the medicine and then subsequently is lesser , around rm 60 , i only see him once per month , so it is not so burdened la

do join our group ya , there you can get more people to answer you and faster , and the group is secret , even you join with your fb , no one will know you have this group or any activities in there , so no need to worry about that