Vitiligo Support Group

Vitiligo or leukoderma is a skin disease that causes loss of pigment, resulting in irregular white patches of skin. There is some evidence suggesting it is caused by a combination of auto-immune, genetic and environmental factors. Half of vitiligo patients develop signs of the disorder before the age of 20, with patches of de-pigmented skin appearing on extremities. Share experiences and support with this community!

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Disappointed in this group 2

i agree with Rolo58
This group seems to be going nowhere.
I want support, stories and just general friends that experience this disease to contribute some thoughts.

I first discovered my vitiligo on my knees after falling and being tripped by my brothers. When the scabs finally cleared the pigment was gone.

What is your story what makes you happy, do your children have it how does you other react to it?

Lets talk

Janie

Replies

mightymo121646
mightymo121646

i had a white spot on the top of my thumb that never went away, i showed my dr. he asked if i ever had blood work done for thyroid , i told him that i had not, we did the test and it was off he charts for hypothyroid, dr. said sometimes it manifests itself through the skin and boy did it ever, being on medication for thyroid didn't help repigment , i became totally depigmented naturally ,and now am starting to repigment , and i don't know why ,
deleted_user
deleted_user

i also have thyroid problems - it and viitigo are strongly linked. So is intolerance to gluten
deleted_user
deleted_user

My son had a scab on his knee and when it fell off the pigment was gone. We didn't think too much about it until a few months later when the white area seemed larger. A year later and it has to a number of areas on his body. It is hard to find information about it and other people with the condition. I started a fb page trying to find other people with the same condition. Hopefully, that will become a support outlet.
deleted_user
deleted_user

so far no suport from any one . I first started this I sent out a message this was back in aug. still no reply or feed back.
deleted_user
deleted_user

I was diagnosed 14 years ago at the age of 11. Another kid noticed a white patch on my back. Every doctor I've seen in the last 14 years has dismissed my vitiligo as irrelevant and so I've never seen any kind of specialist.
I've very recently found out it could be related to a number of other problems I have. Does anyone else have any related problems?
janiecf
janiecf

Think a facebook page on this is a great idea.
An other good link and is free to join is
Vitiligosupport.org. I get a yearly news letter from then and it is amazing how many people have this.
I was laying in be this morning looking at my knees and thinking about my grandson. Hopping he never gets this and praying some cure is found.
I know it sounds selfish as there are so many other disease out there that need cures, but why not help this one too?
Iynz, mine also started on my knee when i had scabbed it from many falls.
Girllunder, check out the vitiligo support, they have much research on what vitiligo is related too.
deleted_user
deleted_user

all my ancestor and my families did not have Vitiligo ,the cause of my Vitiligo seems have some relationship with the mood , i was t
oo depressed befote I got it .
There is a very good forun ,a website created by Vitiligo patients in 2and runs very well now .
All the people there shaing their stories ,helping people get out of the Vitiligo's shadow ,and held activities at different cities spontaneously by the menbers there ,just like a big family .
But it is Chine forum ,all things written in Chinese ,so it will be a little difficult for your foreigners .
deleted_user
deleted_user

The forum :http://www.bbsls.net
anyone who have intrests can go there and have a look