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|Monday, January 16th, 2012|
On being hereditary and insecure
Is this hereditary? How am I the only to get it? I have two children and neither of them have this. No one in my family has this. The only thing I can rely on is knowing that hyperthyroidism runs through all of the females in my mother's side. They are also all white. I'm the first colored child throughout all of my mother's family line. My skin is dark. Dad's family doesn't have any of this either.
And none of them think this is a big deal. It began on my genitals after birthing my first child. I naively thought maybe the spots were scars from the eventful birth. But during a paps appointment well after my second child was two - they had grown and spread, and my doctor said: "Oh, you have vitiligo." I said, "Sh*t, what std is that?" (I'm in a steady relationship, I've never had an std, it seemed like a relevent question to the situation, I'm not implying anything...)
She said it wasn't a big deal either, and to think about pursuing further info when it becomes more of a concern. Six months later its on my left shoulder. So occasionally I feel like cutting it out.. Why should everyone's reaction be to belittle my concerns and guilt trip me for being vain?
No one has taken me seriously because it's just starting, and I doubt they've ever seen anyone with it before. I myself have only ever met one other person with vitiligo, before I was well aware of my own beginnings.
|Monday, December 13th, 2010|
Hi! I've had vitiligo since i was born (i'm 18 now) and it's full-body. when i was younger i was almost 80% non-pigmented but now i'd say im about 50%. Has anyone else experienced extreme re-pigmentation from the sun? I work outside all summer and have for five years but this past summer especially i noticed that i was getting my pigment back. first my skin would freckle with it and then it'd be patches. almost like how vitiligo starts-but, obviously, in reverse. anyone else experienced this? i know skin cancer risk is heightened with vitiligo so it's not like i want to go out and lie in the sun just to get my pigment back but i was curious.
-also on a different note i read somewhere that pernicious anemia and celiac is common in people with vitiligo. anyone experienced that?
|Saturday, August 14th, 2010|
Hey everyone :)
My name is Anouchka, I got vitiligo when I was 2 I just turned 18 yesterday :) To be honest I have been fighting with my self to stop judging my skin for awhile. I love my skin and I accept it, because it's different but other people don't understand it :/. I live in the East so in the winter its completely non noticable. But in the summer I tell myself don't tan, but I get caught up in my friends bragging about their tans. My doctor told me when I was 14 that by the age 18, my chance of skin cancer was almost 200% higher because I wasn't protecting myself from the sun and because of my vitiligo:/. Being 14 I didn't listen to him, and as I am writing this I am suffering from a bad sun burn I recieve today at the beach :/.
My advice, even though I'm still trying to listen to my own advice :)
Everyone with any kind of skin condition is beautiful :)
Listen to your doctor
I went to the UVB light term and it worked so well :)
But my doctors said it wasn't improving, I guess they didn't see the before and after picture :/
So my advice is try that treatment :)
And then there the Microskin.... http://www.microskin.com.au/ :)
.......but a long story kinda short :)
I think my question is, when the white spot get pink does that increase my chances of cancer even more?
Anouchka :) Current Mood: happy
|Thursday, July 8th, 2010|
Guess what i have, its white and patchy.
Waw, many stories out there.
To be honest with you i am a little different.. not nearly as bad, i have it on both sides of my hips, a little on my,,,, special area. and that what fine, i didnt mind it being there, it never bothered me...
that is until it suddenly spread like wild fire in a dry wheat field.
suddenly its next to one of my eyes, then on my forehead, then round to my other eye.
and now it appears to be making its way across the face.
my chest and back, my legs and upper arms and even my hands and even on my feet, these are all places where it is now, and with sun spots on my face and shoulders and back already, im going to look like a multi colored monkey soon.
2 years ago i left the UK and moved to China, into a small city of 2 million people, where people stare at you no matter what. even if i was normal people would stare.
my wife (bless her) has watched with interest as this thing removes my golden tanned skin and replaces it with pure white skin, with the style of which a child would try and color skin in a picture.
Today i have started to do something about it as its affecting my work (students wont pay to be tough by a teacher who is deformed).
So iv been down to the hospital and got a load of creams,,, not they had anything that i requested as the internet said i needed.
But this doesn't matter.
The biggest downside is my baby will be embarrassed of her father, I look terrible in every photo now., and worst of all, the possibility that my little princess may inherit this disgusting immune system virus. If she does i could never ever forgive my self.
In college i learned agriculture so if worst comes to worst i buy a farm and live that way.
So, here i am, being eaten by something i cannot fight, to be left a shell of my former self. But i cling on to some optimism. I can say to my self that people are staring because i am not Chinese (which is true except for my western family). That sooner or later my whole body will be white so i will look normal,, just a little more reflective than other westerners. That maybe just maybe, it will stop and start to reverse,
And if all else fails I can move to the arctic and blend in to the snow.
I SEND YOU ALL MY OPTIMISM AND PRA Y Y
OU FIND A WAY TO ENJOY LIFE AND NOT LET HE BAST**DS BRING YOU DOWN.
Thank you and may which ever god you believe in protect you from your worst enemy, which would be you. it is a hard road and requires the ability to say, F it, . iv got it and cant change that. time to change my life to work around this so i can still have a good life. Current Mood: peaceful
|Friday, April 2nd, 2010|
My name is Chris, and I am 16 years old and i have had vitiligo for my whole life. My parents noticed it when I was about 1 around my ankles. They took me to the doctor, but he did nothing and wanted me to get older before i could use any sorts of medicines or creams on it.
Having vitiligo used to not affect me because i was too young to understand what it was or how it would affect me later in life. My parents saw the patches get bigger, and we went to the doctor again and he wanted me to use protopic. It worked great for a couple of months, but i stopped using it because i didn't like the greasy feel of it.
Now that I am 16, the vitiligo has spread to my legs, ankles, inner thighs, arms, and hands. It has stopped me from doing social things with my friends, and in the summer, i HATE wearing shorts out in public, or to the pool because i feel like everyone is looking at me, and there is nothing that i can do about it.
I have started to do the UVB narrow band light treatment and i would HIGHLY recommend it if you can afford it. It is a little expensive, (up to a couple thousand dollars) but i have seen my spots decrease in size.
Thanks for letting me tell my story, and i love that people with vitiligo can tell their own story and feel like they are not alone! Current Mood: calm
|Saturday, May 16th, 2009|
hello to everyone.
my name is CJ and im 32 years of age .yeah i know the emotions that are associated with having vitligo. i have had this disease since i was 10, it started on my feet and just progressed to my arms and legs, a little big around my mouth. id have to say that vitiligo has taken the life out of me. i too have stopped doing things like dating girls, and being social cos of it. i see people in romantic relationships and the guys get all the girls and its like so frustrating like im here with this disease just dealing with it all by myself. i know people dont understand who dont have it. they may say something at first it was hard to deal with, and then i just accepted it like god gave this to me. and i know that good looking girls dont like guys with skin diseases like vitiligo. i say to myself that the good looking women loves tanned guys, etc etc. its frustrating.
|Wednesday, May 6th, 2009|
on, and on, and on..
I was diagnosed 2 years ago (when I was 27 years old).. it started with a few patches on my hands and face, and is now.. well, everywhere. It progresses almost daily. Yesterday, I woke up to find that it has finally spread to my lips. Joy.
Every time I think I have a handle on it, something new happens. This time of year is always bad for me, because the sun has started coming out which is going to make everything far more noticeable. I am sick of hearing people say "oops, did you make a mistake with your sunscreen?" or "you have some dirt on your hand" (um, that's not dirt.. it's just the teeny bit of skin that still has pigment!).
I am so sick of it that I'm contemplating depigmentation therapy, even though I don't think it's spread enough for that yet.
I know this is a common thread on this community.. but I just needed to vent to people who will GET IT. Most of my friends just tell me that they don't notice it (haha) or that it's not like it's skin cancer or bad acne or something (like that makes it better).
Thanks for listening, everyone.
|Friday, April 24th, 2009|
Vitiligo generally called white spots illness as well or Leucoderma, in which the skin loses its pigment due to the annihilation of melanocytes. Melanocytes are such pigment cells which found in the epidermis (the surface layer of the skin) and there are responsible for producing Melanin (a dark pigment that gives skin its color) and protects against ultraviolet radiation., The skin becomes pale when melanocytes stop producing melanin leaving areas of white patches this is called vitiligo.
To describe Vitiligo symptoms
, the onset of the vitiligo symptoms is very visible in darker and wheatish skinned people as the contrast of white patches looks obvious against dark skin. The manifestation of flat areas of normal-feeling skin with complete pigment loss is sudden or gradual and appearance of vitiligo symptoms the lesions appear as flat areas with no pigment.
In common the affected areas are the face, elbows, knees, hands feet, and genitalia.
The initial vitiligo symptoms are easily observable with flat white spots or patches on your skin. Vitiligo symptoms usually starts the first white patch appears on the skin area remains exposed to the sun. Vitiligo symptoms do not cause physical discomfort to your skin, such as itching etc.
Vitiligo symptoms, vitiligo most commonly affects traumatic areas particularly on the face, upper chest, hands and groin. It may be widespread, affecting both sides of the body it may affect only one side of the body or it may affect only one localized area.
If the affected area contains hair, the hair may turn white then vitiligo symptoms sharply distinct white patches are seen rather obviously. Sometimes there may be seen by a circular white patch, resembling a halo.
If you get more info please visit this site: http://www.vitiligoguide.com/
|Sunday, September 7th, 2008|
Ultimate Vent/ Get to Know
I've had vitiligo since I was about 8 years old.
In third grade, a girl who i absolutely hated started teasing me in the girls restroom about some "freak white spot" on my neck. I didn't believe her.
I went home and asked my mom, you know, just in case, and she confirmed it. There was some random "freak white spot" on my neck.
From there I started traveling from doctor to doctor, tried various forms on treatment and today at age 19 ( close to 20) I am covered with vitiligo from head to toe. Every single body part as some form of Vit formation ( and in the most ridiculous patterns might I add).
For the majority of my life, I didn't care much about it. It made me, well, me. But then Junior year of high school rolled around, the pressure increased, the depression started and with it my vitiligo spread to my face. I have the most obnoxious looking spots around my eyes, lips and chin.
It completely blows because when people first meet you that is what they look at. Your face.
Luckily I've found pretty good cover up but I still feel like people can see past it and notice what I'm trying to hide.
I prevent myself from doing things I enjoy becau
se of this disease.
I used to swim on a regular basis as a child. It kept me healthy and happy, I loved the heat and the sand and the beach.
I haven't been in a swimming pool in nearly 8 years. And now I always dread going to the beach because of how I feel when I'm there. Empty and as if I'm missing something a part of me.
I love running and kickboxing but those 2 sports increase sweating, which melts the cover up off my face.
I don't run or kickbox anymore, unless its in the privacy of my own bedroom ( which isn't as fun as doing it in a class of course).
I don't know how to accept this skin condition. I don't know how to live a normal life without letting this skin condition bother me.
I don't know how to walk in stores or exercise in public without being paranoid that other people are staring at me and thinking about why i look the way I look.
I can't bring myself to just try and not care if people are talking. I know I shouldn't but I can't help it.
I absolutely HATE how this skin condition has taken over my life and most of all how I've let it take over.
I've gained an obscene amount of weight.
And the person I used to be is no more because of the depression I fall in and out of.
How do I fix this? How do I accept this as just a part of me?
Most of all, how do i make myself realize that I'm not alone in this?
I know others are in exactly the same boat as me, possibly their situation is far worse.
It's just hard to imagine when you don't personally know someone with the condition i guess.
I feel like I'm all alone in this and I will be forever alone because instead of living normally I hide out.
As a result I lose relationships with people.
It's becoming a self handicap and I can't break out of this routine.
Is anyone else in the same boat?
Has anyone else been in the same boat and over come it?
|Friday, August 22nd, 2008|
Hi evry1, I’ve jus joined and was reading thru all the stories - let me add my bit :).
I'm South African. I am naturally of medium complexion as I am Indian. So my vitiligo it is clearly visible.
I found my first spot at around 22yrs - I think my mom mentioned a small dot on my back.
It then really became evident with a small then expanding dot on my neck and corner of my eye/s and then as they say the rest is history...
In the first 1-4years I visited the best dermatologists and vitiligo specialists none of which I can honestly say sincerely offered the kind of support a person would need after such a sudden turn from a healthy, generally good skin to the helpless vitiligo.
Not only that but no question could be answered conclusively uptil now yet the treatments that cost a load where dished out. There is still no cure. They still don't know how it starts and why. They also don't know whether the treatments they put u on will work.
I did at more than one point with my vitiligo query the bleaching/de-pigmentation option however I was never given any conclusive response with facts - like whether it was within my grasp, whether the technology was available to our local dr's or whether it was sumthin only Michael Jackson could afford!
We just put our faith in dr's blindly.
The medication offered at the onset of the patches - at that time just a few patches - were mostly creams. I can't say they did anything tho as it still spread and after a year or so I initiated the PUVA treatment, on advise from my dermatologist (vitiligo rep for south africa) - which was the exposure to UV light within a special cubicle resembling a shower. There was with no medication taken simultaneously and the amounts of second’s u were exposed to depend on the sensitivity of ur skin. This treatment had to be repeated 3 times a week in my case, maybe it would decrease with the need - very similar to a maintenance program for life. It usually turned the patches red (like sunburn) and occasionally a spot or so of Melanin would surface.
However the melanin resurfacing was not consistent, some islands had melanin spots others didn’t;
Also my other concern was that the treatment did not in any way inhibit the vitiligo from spreading to other areas;
going for the treatment was inconvenient and expensive;
after the treatment the vitiligo islands were sensitive and sore like they would after sunburn - the exposure also made the surrounding skin a little darker than ur normal colour.
I stopped my treatment after a few months - I was still a young girl at that time.
I just lost hope cos with all of the above, if after a treatment I wanted to speak to my dermatologist to ask just one question he actually said he would charge me as a consult. I didn't think that was professional.
I did go to another dermatologist but I still felt the same attitude that they saw us as a form of steady income NOT people who they wanted or could really help. One actually tried to do some psychoanalysis on me because I asked questions and didn’t want to commit to a treatment anymore.
Why not just say there's nothing you can do about it. Like balding!
Looks were obviously a priority at that age, any age, even though I quickly learnt there is nothing I can do about it. As one of the girls actually said - she loves hers - strangely enough I have had more than one person come up to me and say how nice i look - once a girl grabbed my hand and said what is this - and she thot it was so great and looked beautiful and that so long as it gets peoples attention - she wished she had it !!!!!!!!!!
I obviously thot she was crazy! But wouldn't I just love getting more of those reactions.
I think more ppl get curios, hopefully not to scared of it...
Still getting back to the way things used to be would be the ideal result!
I have also tried finding info on depigmenting as my vitiligo has spread alot.
We hear about bleaching and depigmenting but I wonder is it actually an option for the average person.
I actually found out about the skin lightening option from one of those institutions that do botox etc and they said they’d never attempted lightening skin of someone with vitiligo and that they do their lightening in stages and that it might leave you with an added shade. It didn't seem to be an advisable for me.
People also talk about a tablet that you can take that would make it spread faster, does it exist?
What is fact and what is fiction? Maybe you guys overseas know a bit more....
Anyway - that's my story.
|Monday, August 4th, 2008|
I just found this community (it had struck my mind earlier to search for a community like this, but I hadn't done it til now), and I have to say, I think it's neat.
I got my first spots on my knees when I was about seven (I'm 20 now), and from there it's spread to various parts of my body (elbows, hands, ankles, inner thighs, inner arms, etc). I'm part Native American, so when I tan in the summer, the spots show up pretty well. But I have never come across a) anyone who finds me weird or even slightly unattractive based on the disease (if anything, the guys I've dated think it's cute) or b) people with the disease who are ashamed of having it. I've met maybe a handful of people with the disease, and all of them seemed at least comfortable with it, if not semi-proud.
But finding this community...when I read through the last few entries posted on here, it occured to me that maybe not everyone is proud of their spots the way I am. Yes, I get teased; yes, I've been compared to Michael Jackson; yes, young children have called me "cow girl." But at the end of it, I like my spots. They make me, cliche as it sounds, special. I have been guilty of the sin of holding my hands up to admire them and the way the spots almost make gloves along my fingers. In short, as I already stated--I like my spots, and I don't plan on getting them treated. At all.
Of course, I don't have spots on my face or scalp, nor am I dark-skinned enough to make my spots hugely noticeable (especially in the winter). But even so, it surprised me to see that people want to get rid of their spots. It was a mindset I hadn't considered before--that maybe some people would want to hide them; that maybe some people would see them as a major social disadvantage. So to this community--thanks. I've learned several new things today.
And to this community, I also want to say--keep your spots, don't keep them, it's your choice. But I hope you can be proud of having them at some point, or at least make sure that having them doesn't completely define who you are and how you live your life. In the end, it's melanocytes--it really is skin deep.
So I send love out to my fellow spotted people :D Who knows, maybe we're aliens and we just don't know it. That'd be neat.
Have fun, everybody.
|Saturday, March 15th, 2008|
hello! and protopic use question
I am new to this livejournal, and am so glad to see something like this. A little bit about myself...I am 22 years old, of Indian American (pretty tan skin), and have had vit since about age 7. It never used to bother me much, but since I started medical school 2 years ago, it has gotten progressively worse (maybe stress? autoimmune diseases are pretty unpredictable).
I visited a local dermatologist who put me on Protopic. I have been using it off and on, mostly around the white circles around my eyes. I started about 8 months ago, and have seen some repigmentation.
Although now, I have new spots forming, some growing very slowly, others (this big patch on the back of my neck) much faster! Though it does not seem to bother my parents, friends, or even my boyfriend (side note: there ARE people out there who are accepting of this...if you are single, take my word for it...the person who ends up accepting you for it truly loves you for you, and NOT for beauty or other superficialities..), it tends to make me VERY subconscious.
I wanted to know if anyone else has noticed new growths and spots after starting Protopic treatment (in areas that you have not applied the drug to)? I am not going to see my derm for another month, but just wanted to see if anyone had a similar problem.
Thanks, looking forward to new posts from you all and more stories of how confidence in ourselves is the best treatment for this dz.
|Thursday, November 15th, 2007|
I went to the dermatologist (for the very first time ever) on Wednesday of this week. He suggested the following to treat the vitiligo:
1) NB-UVB therapy. 2x a week until I see results. He said the face responds *well* to this type of phototherapy. Here is a link with some info: http://www.medscape.com/viewarticle/557113
2) A Hydrocortisone type medicine for the depigmented areas.
3) Vitigone for a cosmetic fix. Available online here: http://www.vitigone.com/products.cfm
He says I can use the Vitigone while doing the phototherapy treatments and creme.
I am cautiously optimistic. Just wanted to let you all know in case you were thinking about going to see someone. I started the phototherapy on Wednesday too. It felt like what I think it would feel like to go to a tanning booth.
Hope this has helped someone here.
|Monday, September 17th, 2007|
I can't even remember how long I've had vitiligo for. I'm 19 (well 20 in a couple weeks) now, and I think it started about 10-12 yrs ago on my knees. I can't remember how I felt about it then, although I do remember that I NEVER wore shorts, so I was probably pretty embarrassed. A little time passed and a small little patch appeared on my elbow. I remember being prescribed a cream that I used for a while, but it didn't do anything.
Fast forward to about 6-7 months ago, at this point the small patch on my elbow had spread all along my forearm to my hand and fingers. My other hand and fingers had become affected as well and I happened to notice a familiar small patch on my other elbow. I developed a patch on my back, on my hip, on my feet and ankles, and some other places I care not to mention. By this time, however, I was pretty much used to having it, and I didn't really care about it. I never attempted any cover-up makeup or anything, too lazy for all that work. I no longer cared what people thought about it, shorts regularly, and pretty much ignored it. I didn't really care, but I did, and still do have moments when I am reluctant to take my shirt off when swimming, or angle my arm away from people. I was prescribed lots of creams over my lifetime, and to be honest, I can't say they don't work because I never used them regularly. Overall, though, I had pretty much accepted living with vitiligo.
Now the reason I chose 6-7 months ago as the point to stop my story. This is when I developed something on my face. It started with 2 little patches on the corners of my mouth. I thought I had living with vitiligo under control, but let me tell you, when it spreads to your face, it's a whole new ballgame. I hated the thought that the patches on my face would be the first thing anyone would see. Now, I have another small patch on my cheek, and some around my eyes and forehead. I'm very thankful that these patches aren't as white and noticeable or it would probably affect me a lot more negatively. It helps me, however, to think about how lucky I am that I have a relatively harmless condition like vilitgo when there are those that are far worse off; those that have cancer, those that have no legs or arms, or those who didn't even get to live 19 years. This thought really helps me realize that I could be far worse off, and to be happy with what I have, and be confident in the person that I am.
Don't get me wrong though, I'd still prefer not to have it, but it doesn't bother me nearly as much as it used to. Right now, I received a lotion from my doctor to use along with NB UVB treatment. It's a new treatment that I heard is highly effective, and as such I am going to give it a try. I'll let you guys know if It helps at all. Current Mood: calm
|Saturday, July 21st, 2007|
I am so glad there is a place where other people understand what it is like to have vitiligo! My first sign fo vitiligo was when I was 12. It was on my legs ankles. About a year ago at the age of 39 I started to notice white patches on my hands and forearms. The patches on my hands are big and very noticeable. Even though I am white, during the summer I tan so it really stands out. I do wonder why , after 29 years of no new patches, did It suddenly start up again this is an annoying disease! I am single and worry that it will spread to my face. I think about it every day... also will I ever find anyone who wouldn't care what my skin looks like? Anyway it feels good to talk about it.
Current Mood: okay
|Saturday, May 26th, 2007|
How fast does vitiligo generally spread? I first noticed some small white patches on my hands a few weeks ago, and since then it has spread significantly on my hands, and on my face (I have two large patches beneath my eyes, and two smallish ones near the corners of my mouth). I also have patches on my body. I don't really know when they appeared, but I have looked at photos of my face and I *know* that I didn't have noticable patches until this month.
It seems awfully quick to me. Everything I've read about vitiligo (and I've read a lot in the 3 days since my diagnosis!) seems to indicate that it progresses a lot slower than mine seems to be.
I'm not terribly worried about it, although the patches on my face make me a little nervous. I am fairly light skinned, but the patches are obvious.
|Wednesday, February 21st, 2007|
I'm Evie. I was diagnosed with this cursed disease about 2 years ago. I have patches on my face, a couple on my legs, and I have patched around some freckles. I wear cover up and what not.
So Vitiligo wasn't a "hot-button" issue for me untill my best friends boyfriend started to make fun of me (This was before I wore the makeup). And it really hurt me, so I punched him in the face, and I got suspended from school, blah blah blah. That was in grade 8 though.
I've been seeing a Natropath (sp?) and he put me on a gluten-free diet cause apparently when I eat gluten my patches get whiter :|
And I'm naturally tanned so they really stand out.
And lately I've been so down, because I don't have any friends that can sympathize, and I just need someone to tell me that they're there for me.
|Wednesday, February 7th, 2007|
Hi I'm Raven *waves*
I haven't been diagnosed yet but I've noticed that my skin (half of my lips and a spot on my chin that goes down my neck) is either darker (my lips) or lighter (my chin) than my skin. Do you think this could be vitiligo? I don't know..at this moment I'm confused and to tell you the truth...I know very little about Vitiligo. Any help? Also, how have you dealt with vitiligo over the years? I'm personally a bit confused but I'm not going to let something like this get to me...
|Saturday, December 2nd, 2006|
Hi I'm Jamie :)
I have a white patch on the back of my neck, by my armpits, above eyebrow, my eyelashes and part of my eyebrows are white. I've gone to the derm. once. He prescribed a cream called Elidel. Does anyone else use that? I used one tube, but never went back to pick up the refill. Do any of you dye your white eyebrows? I wanna dye mine, but I'm a lil' worried that they'll fall out. What's a good makeup to use on the white patch above my eyebrow? thanks!
|Monday, September 4th, 2006|
Morning all - advice please!
I am really struggling sleepwise at the moment, and the herbal stuff isn't working brilliantly - a few years ago I took Melatonin supplements which worked a treat but I stopped when I realised there was a warning against auto-immune disorders - can anyone tell me why?
If it just makes the vitiligo worse I don't care, as it's pretty bad anyway!
If it upsets my immune system generally and will make me ill, obviously I won't do it.
Any ideas folks?
Thanks! Current Mood: calm