Anyway in these forums have Vitiligo?

SOMDRAVEN

Big Dog Daddy
I would like to connect with anyone in the SOMD area that has Vitiligo. Vitiligo is a non-contagious auto immune skin disease. A person's immune system attacks their healthy skin cells causing white patches to form. There is currently no cure and very little funding as many in the medical community consider it a cosmetic problem. The psychological effects can be devastating. The white patches usually start on the hands, feet, elbows and knees but can affect or spread anywhere on the body. I am part of a national group called VitFriends. We also have a local chapter of VitFriends based in DC. I would love to get together with some local people to discuss our condition. Thanks.
 

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Bird Dog

Bird Dog
PREMO Member
I would like to connect with anyone in the SOMD area that has Vitiligo. Vitiligo is a non-contagious auto immune skin disease. A person's immune system attacks their healthy skin cells causing white patches to form. There is currently no cure and very little funding as many in the medical community consider it a cosmetic problem. The psychological effects can be devastating. The white patches usually start on the hands, feet, elbows and knees but can affect or spread anywhere on the body. I am part of a national group called VitFriends. We also have a local chapter of VitFriends based in DC. I would love to get together with some local people to discuss our condition. Thanks.
I have it but I don't let it bother me. I'm pretty ugly anyway......just kidding. If people view you because of a disease you have no control over...avoid them. Its not deadly. debilitating or contagious as you stated. I know a lot of people that have issues far worse off that Vitiligo. If you want to get together, have a drink and discuss, hunting, fishing, and beautiful women, I'm your guy. Also, the best sunscreen.
 

SOMDRAVEN

Big Dog Daddy
Thanks for your response. I agree with everything you said. To some people though, it can cause a lot of psychological effects. It is hard for a lot of people to live day to day with the constant teasing and staring. Many people have taken their lives over it. I have met a few adults who have had it since childhood and still have lots of painful memories. Hearing their stories will definitely choke you up. Thanks again for responding.
 

vraiblonde

Board Mommy
PREMO Member
Patron
This is not meant to be insensitive, but I find vitiligo attractive. I know those who have it don't like it, but I've always found it interesting and beautiful. I probably stare on some level, and I try not to, but it's in the same way I would stare at someone with any other feature I find striking.
 

inkah

Active Member
This is not meant to be insensitive, but I find vitiligo attractive. I know those who have it don't like it, but I've always found it interesting and beautiful. I probably stare on some level, and I try not to, but it's in the same way I would stare at someone with any other feature I find striking.

Interesting comment and I was thinking something along the same lines. I typically have 2 reasons for staring, or, as I like to say, looking longer than normal, at a person:

1. Because I really do think they suck - because of something they did/are doing. That stare includes a vast number of rapidly fired, extraordinarily vicious eye daggers. Basically, I am killing you where you stand with my eyes.

2. Because you fascinate me.

I REALLY REALLY REALLY hate that people with this condition feel so bad. And I hope Mr. Bird Dog up there becomes a spokesperson or something, because apparently folks need to hear his message.

Can we please retrain people to refuse to be so darn sensitive to stares. Unless of course they are my eye daggers - in that case, I expect immediate repentance and reform. And possibly gifts.
 

vraiblonde

Board Mommy
PREMO Member
Patron
Can we please retrain people to refuse to be so darn sensitive to stares.

There are a number of reasons why someone would look at you longer than is socially acceptable, and it's not always because they find you repulsive. I, too, hate that people with this condition feel so bad and I try to be sensitive of that. I would never want them to think I was staring at them because they are ugly, especially since it's just the opposite. I wish they could see what I see.
 

Bird Dog

Bird Dog
PREMO Member
This is not meant to be insensitive, but I find vitiligo attractive. I know those who have it don't like it, but I've always found it interesting and beautiful. I probably stare on some level, and I try not to, but it's in the same way I would stare at someone with any other feature I find striking.

Hello Darlin’
 

SOMDRAVEN

Big Dog Daddy
This is not meant to be insensitive, but I find vitiligo attractive. I know those who have it don't like it, but I've always found it interesting and beautiful. I probably stare on some level, and I try not to, but it's in the same way I would stare at someone with any other feature I find striking.

Thanks for your reply. Some people do find it attractive. It just does draw a lot of stares which i understand. Most of the people i know with Vitiligo just wish people would ask them what is wrong instead of constantly staring. Everyone is diff i guess. It does bother me sometimes but then again I just try to look at it as people r just wondering what it is and not staring at you because you are ugly.
 

SOMDRAVEN

Big Dog Daddy
Interesting comment and I was thinking something along the same lines. I typically have 2 reasons for staring, or, as I like to say, looking longer than normal, at a person:

1. Because I really do think they suck - because of something they did/are doing. That stare includes a vast number of rapidly fired, extraordinarily vicious eye daggers. Basically, I am killing you where you stand with my eyes.

2. Because you fascinate me.

I REALLY REALLY REALLY hate that people with this condition feel so bad. And I hope Mr. Bird Dog up there becomes a spokesperson or something, because apparently folks need to hear his message.

Can we please retrain people to refuse to be so darn sensitive to stares. Unless of course they are my eye daggers - in that case, I expect immediate repentance and reform. And possibly gifts.

Thx for ur reply. I am doing my best 2 bring awareness 2 this disease.
 

vraiblonde

Board Mommy
PREMO Member
Patron
Thanks for your reply. Some people do find it attractive. It just does draw a lot of stares which i understand. Most of the people i know with Vitiligo just wish people would ask them what is wrong instead of constantly staring. Everyone is diff i guess. It does bother me sometimes but then again I just try to look at it as people r just wondering what it is and not staring at you because you are ugly.

Anything out of the ordinary will draw attention, that's just the way it is. Whether you have vitiligo or are a Victoria's Secret model, people are going to look because it's outside the norm, not necessarily in a bad way. But I get how it would make you feel self-conscious.
 

sparky43

New Member
Vittillgo

I have the disease as a by product of the treatment of cancer with Keytruda.
Twenty percent of those of us that had a complete response came down with vittillgo. It's really a crapshoot when they unleash your immune system as to what might happen. I look at it as a small price to pay of having my cancer in remission.
 

1stGenSMIB

Active Member
I have a relatively mild case that developed in my late 20's (20 years ago). Early on I tried some steroid creams that helped, but you can't rub the stuff near your eyes and it irritated my skin, so I gave up. It used to bother me a lot more, but now I figure everyone else has to deal with it more than me. I only see it in the mirror. The weirdest thing was that some hair follicles went colorless too, so I have patches of translucent/white hair in my beard, that don't necessarily follow the patterns of lack of pigment in the skin. :shrug:

I love the water...big boats, little boats, skiing, fishing & sailing, so big brimmed hats, and lots of sunscreen are SOP. I put a big-ass bimini on my sailboat about 5 years ago that covers the whole cockpit..that helped a lot..when there is no pigment to absorb the UV rays, you just burn.

About 1 in 100 people..considering it could always be something worse like sparky had (glad you beat the cancer, I have never heard of vitiligo being a side effect!), I'll consider myself lucky and deal with the occasional stare. It is nice to know not everyone is "freak staring".
 
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