Vitiligo

Vitiligo

This page was created to share vitiligo stories,what they passed through, their experience and growing up

28/04/2023

2x already achieved now let's go for the 100% left
Go big and enjoy šŸ’°
Go small and be okayšŸ¤
Go huge and be happy and enjoy šŸ’¼

https://bitsports.ai/?ref=epassively&position=left

https://t.me/Bitsportsai

22/06/2020

Being different may be hard but it's unique


shoutout to everyone loving their bodies. Together we stay strong..

Vitiligo emotional experience and finding happiness 10/03/2020

This actually brought tear to my eye

I couldn't imagine what growing up would have been for anthony. As a little boy getting called different names, from cow to dalmation. lot of teasing and lonely days. But anthony got an happy ending. so amazing how it turned out.

we belong to something beautiful........................

https://www.youtube.com/watch?v=ZD_eJs5SkH0&t

Vitiligo emotional experience and finding happiness I have always been treated differently growing up, knowing that i can go somewhere and the people there treat me the same way as every one and loved me is a ...

Winnie harlow 27/02/2020

For those still having low self esteem and seems to be too stressed cause they have vitiligo.

If she can do it you also can

https://youtu.be/rl3ATibpY78

Winnie harlow People who thinks they cant achieve something because they have flaws are actually capable of anything. If Winnie can do it yes you can, look past those glar...

Photos from Vitiligo's post 18/02/2020

DIVERSITY IS AWESOME

Diversity as defined by the University of Oregon states that ā€œThe concept of diversity encompasses acceptance and respect. It means understanding that each person is unique.ā€ Vitiligo is what makes us different and we feel the need to protect ourselves.

I still find it very difficult not to react to the stares, unkind words and just plain ignorance of others; how does somebody do this to another person. It does hurt to see what you have to contend with on a daily basis and you just want to protect yourself from the ignorance of others.

we all have found ourselves in situations that make us angry; there is a part of us that says; ā€œIf I can ignore these people and look past the stares and go on with my life im good! its the inner strength and the fact we have accepted who we are that makes us special. It is amazing how we can look past our outside and shine from within.

We all have dreams and goals and many have such amazing confidence that allows them to make good friends, excel in school and belong to clubs and sport teams; Vitiligo is something we have and does not define us as a person. I know I am so proud of myself!

We need to remember that we can be strong and look past the ignorance of others. Learn to love yourself the way you are and you will be surprised to see how special you really are.

Timeline photos 13/02/2020

STILL HAVING LOW SELF ESTEEMšŸ¤”šŸ¤”

I was diagnosed with vitiligo from a young age. Because of this, I had low self esteem and I felt ā€œdifferentā€ from the other children in my classes. Different because of the skin. I only began to love my vitiligo a few years ago when I was 16+. Now thanks to celebs such as Winnie Harlow who have vitiligo, I love mine! I get so excited for summer so I can catch a tan and show it off šŸ˜ whereas before I hated it and couldnā€™t wait for winter. My skin is unique and animals such as giraffes have patches to make them beautiful too!

10/02/2020

ISN'T IT AMAZING!!!!!!

I know I am awesome. Vitiligo changed the color of my skin but it has not changed the person that I am. I have not and will not allow Vitiligo to stop me form doing anything; we all need to stand tall and walk proudly.

God chose us to be different and unique; this is how things were meant to be and we donā€™t always know why this is. I have had Vitiligo for most of my life; I was about two when I was diagnosed. While everyone tells me I am lucky that Vitiligo will not kill me, I still wonder if all the sunburns will affect my health in the future.

From the website you can see how Vitiligo has affected each of us differently. We have all learned first hand that everyone is not nice and some people are just plain mean. We have to be strong and look in the mirror and see the beauty that we all have within.

We all have parents that want to protect us and sometimes it gets really hard to tell my mom that I am o.k. with my Vitiligo and she needs to ignore the ignorant people who choose to stare, glare and make rude comments. It is definitely not my problem; it is theirs.

There are so many good things that Vitiligo has brought to my life. I have made new friends that understand what it is to live with Vitiligo and I have come to realize that I have another family, my Vitiligo family. They all mean so much to me. and to all the researchers and doctors who work towards finding a cure we are all so thankful.

I cannot change what I have but I can be the best me possible!!

ANYONE ELSE FEELING PROUD TO BE UNIQUE

31/01/2020

I was born in Sierra Leone, West Africa at the height of a decade-long civil war there.
In addition to loosing both of my parents in that war, I had vitiligo. Among the villagers of my country, vitiligo is considered a curse of the devil. I was considered to be the devilā€™s child, and people either ridiculed me, shunned me or beat me.
When I was four years old the wind blew a magazine against the gate of the orphanage where I lived. It was jammed there until I rescued it. That is when I discovered the photograph of a beautiful ballerina on the cover. She looked so happy and carefree, that I dreamt of being just like her.

A few months later I was adopted by an American family, and soon after that my new parents encouraged me to take ballet lessons. At first I wondered if the world would accept a spotted ballerina, but eventually I became so engrossed in my dancing that I forgot about my spots.

My parents never seemed to care that I was spotted, possibly because vitiligo ran in my adopted family. Soon I realized that my ballet teachers werenā€™t concerned about my spots either. When they looked at me they saw my talent, not my vitiligo. Eventually, after years of hard work and determination, my dream came true, and I became a professional ballerina.
I have traveled the world as a ballerina, dancing in South Africa, the Netherlands, Israel and Turkey. I have danced with the South African Mzansi Ballet as a guest, and with the Dance Theatre of Harlem as a company member. This year I am dancing with the Dutch National Ballet, one of the most famous classical ballet companies in the world.
"I am very open about my vitiligo. I hope that by my example, I can inspire other young people with vitiligo to strive to make their dreams come true too"

22/01/2020

PATIENT STORY(David Cont.)

Unlike others, whose Vitiligo is primarily manifested on the arms, torso or legs, David could not easily conceal his condition. He did not wish to wear make-up and thus his Vitiligo was prominently on display each and every day. Sadly, the ignorance in the world about Vitiligo left David open to unwelcome stares, rejection and sometimes even cruel and hurtful remarks. Among the remarks that David experienced: ā€œWhat is that on your face?ā€ ā€œWhatā€™s the matter with your face?ā€ ā€œIs that ā€˜thingā€™ on your face contagious?ā€ Other times it was just that constant on-and-off stare that we all think the person we are staring at does not notice. Well, they do! Sadly, sometimes these questions came from people who knew him before Vitiligo. Other times they came from complete strangers on the subways and streets of New York City. David tried to ignore the questions and stares, but at times genuinely felt hurt and annoyed by them. He once said to his mother that ā€œhe sometimes felt like a monster.ā€ Not surprisingly, David also once said that the only strangers he did not mind getting questions about his Vitiligo from were children. In hindsight, and perhaps a clue to the true depth of his suffering and despair, David once expressed concern about the likelihood of his future children developing Vitiligo and the hardships that they would have to endure.

In the late summer of 2007, David began to notice a single circular white patch (about the size of a quarter) develop on his right cheek. At first, David and we thought the patch was perhaps the result of over exposure to the sun during a family cruise to the Bahamas earlier that summer. Regrettably, at that time, none of us knew anything about Vitiligo. Gradually, the white circular patch began to grow and then others appeared on his face and neck. Later, his right eyebrow, eyelashes, and a patch of hair on the back of his head also began to turn white. A visit to his primary care physician in the Fall of 2007 resulted in a diagnosis of Vitiligo and a referral to a New York hospital for further evaluation and subsequent treatment with Narrow Band UVB (Excimer Laser) therapy. David received seven Excimer Laser treatments before his death and did not experience any significant improvement or restoration of skin pigmentation as a result of those treatments.

share this to create awareness and try to help other young people with Vitiligo,

Photos from Vitiligo's post 21/01/2020

PATIENT STORY(David)

David was a kind, sweet and sensitive single young man of twenty-five with a very bright future ahead of him. In the early fall of 2007 he was diagnosed with Vitiligo and tragically, less than a year later on July 15, 2008, he chose to end his life. Nothing will ever be the same for the family and for those who knew and loved David. The world feels like a different place without him. But, together, all of us have resolved to continue with our life journey because we know with absolute certainty that is what David would have wanted.
In loving memory of David, we offer this brief account of his life and struggles in the hope that it can educate and bring awareness to other families of children and young people with Vitiligo. We have painfully learned that Vitiligo is not just a minor skin condition that can be easily treated or covered up with make-up. But rather that it is a complex, currently incurable and often chronic medical condition that affects the whole person, including your loved oneā€™s mental health.
Vitiligo can result in poor self-esteem, significant psychological distress, major clinical depression and tragedy. It is imperative that families of children and young adults diagnosed with Vitiligo are aware that initial and ongoing mental health screening and evaluation are just as important as the dermatological treatments currently offered to treat persons with this condition. Your loved oneā€™s life may very well depend on early diagnosis and appropriate treatment of depression and/or other co-occurring mental health disorders.

David was born in the Bronx, New York, on December 19, 1982. He graduated from Sacred Heart High School in Yonkers, New York, and in 2006 graduated from Lehman College with a Bachelor of Business Administration. Up until the time of his death, he was working in the Finance Department at MTV Networks while also attending evening classes necessary to acquire the Public Accounting Certification (CPA). David was a high achiever and very ambitious. He was sure he would earn millions and spoke of his dream of buying his parents a house and his beloved sister, Shanna, a car. Those were his primary goals.

Everyone who knew David loved him to pieces. Neighbors were fond of him, describing him as well-mannered and warm. Others said he was humble, gentle, and so very funny. David was also aware of the ills that plagued the world and felt deep emotion and empathy for those less fortunate. He wanted to live a simple life and contribute those millions to others so that they could also live a good life. The note he left on the windowsill said simply: ā€œEver since birth I stood for myself and what I believed in. I never did anything wrong.ā€ We donā€™t know why he wrote those words. At first, we thought that perhaps he felt that Vitiligo and the other difficulties in his life were forms of Divine punishment. But with the passage of time, we have come to understand that perhaps that is simply how he wanted to be remembered. Sadly, there was no time to say goodbye and we will never know for sure what our beloved David was thinking on that fateful summer morning in 2008. His su***de will forever remain a mystery just as the many others that occur each year ā€“ one every eighteen minutes in the United States. We all know that the stress of modern life can sometimes be difficult for children and young people to bear. But for those with Vitiligo daily life can present additional challenges and stress. šŸ˜­šŸ˜ž(to be continued)

20/01/2020

PATIENT STORY(mckale)

My name is Mckale from Starkville, MS. As a child, I always had a small white patch on the left side of my eye that I just assumed it was a birth mark. It never spread and it wasn't bothersome, so I never worried much about it. My mom even said it was a birthmark because she had forgotten that I was not actually born with it. So by time I got to the fourth grade another patch began to come on my forehead I thought maybe it was just sun damage.

I tried not to worry and just ignore it, thinking it would just stop. But it didn't. Itā€™s funny because I didn't immediately associate this with the patch I already had on my eye. In fact, it was always such a part of me that the thought never even entered my mind that I could have had vitiligo as a child and never knew it. But one day, I did think about it and I asked my mom. She started remembering that I had actually developed the white patch sometime after I was bornā€¦as to exactly when, she couldn't be sure. I have always been a very sensitive child, both emotionally and physically. I started thinking about how I was looking now and what people would think and say.
Then I began searching for ā€œvitiligo curesā€, that could stop my vitiligo from spreading, I could not find much. I mostly found a bunch of websites selling creams and topical oils.
After six years I then began to get patches under my right arm and I knew I would live with this disorder for the rest of my life. I had such low self-esteem, and began to hate myself; people would make fun of me and call me names such as; 101 Dalmatians and patches. Of course it got to me, but over time God taught me how to accept and love myself for who I really am. I realized when you learn not to care about what others have to say or judging you that's when God began healing you. So never be ashamed of yourself or what people think of you because we are all humans and everyone has flaws.

16/01/2020

PATIENT STORY:(Natalie's CONT)

My parents never made me cover me up or feel as if there were things I couldnā€™t do.
She counts her blessings in that, throughout her childhood, Natalieā€™s parents never made her feel self-conscious about her appearance. ā€˜I wore shorts in summer, I went to the beach. Everybody knew I had the condition, but it wasnā€™t a big deal,ā€™ she says. ā€˜My parents were very empowering. If they ever caught anyone staring at me, theyā€™d make a remark, letting them know it wasnā€™t an acceptable thing to do.ā€™
All that changed when Natalie was 12 and her parents moved from East London, where sheā€™d grown up, to Ess*x.

Struggles at school

A predominantly white area, Natalie was one of the few pupils in her school from a mixed race background, and the only one with vitiligo. ā€˜Seniors school was really hard,ā€™ she says, recounting instances of name-calling. Being singled-out because of her skin meant that all her normal teenage worries were amplified.
Along with the usual teenage worries like spots, exams and boys, there was also thisā€¦
By the age of 13, she decided not to have any more treatment despite wishing she could make the condition disappear. ā€˜Iā€™d had enough of hospitals and decided to leave my skin to do what it wanted to do,ā€™ she says. Natalie stuck with that decision until turning 30 when she decided sheā€™d give treatment one more try to see if there was any hope of something working.

One final treatment attempt

Narrowband UVB is a form of light therapy used to stimulate pigment cells in patients where vitiligo affects at least 20 per cent of the body. Treatment is intensive and Natalie underwent around 50 sessions over a 13-month period.
I was getting up at 5.30am to attend hospital twice a week, before starting work.
The commitment paid off and, after four months, Natalieā€™s natural skin colour began to return. When treatment finished, ā€˜a whole new world opened up,ā€™ she says. Her confidence increased and, although some patches of affected skin remained, she could do those things she had stopped herself from doing before, such as go the beach without feeling awkward.

15/01/2020

PATIENT STORY:(Natalie Ambersley)

Growing up can be hard enough, but for those with vitiligo the normal teenage worries about appearance are increased significantly.
Natalie Ambersley was too young to remember when the first white patch of skin appeared on her hand.
She was 18 months old and, being mixed race, the patch was immediately obvious. Her parents arranged for her to see the GP but, as Natalie says, ā€˜The doctor had no idea what it was or why it had developed on my skin. Back in the 1980s, vitiligo wasnā€™t a common condition and was therefore hard to diagnose.ā€™
By the time Natalie was three, the patches had spread to her arms, legs, and face. It was a dermatologist at Great Ormond Street Hospital in London who was finally able to diagnose her with the condition. From that point on Natalieā€™s childhood was punctuated by, what seemed to her, like an endless series of hospital visits.
ā€˜Mum was keen to sign me up for new treatments and experimental trials. I was always trying out some cream or other, but nothing seemed to work,ā€™ she says.
Natalie had some results with steroid cream. Applied twice a day to the affected area, the cream was successful in clearing up the patches on her face.{STAY TUNED}

14/01/2020

Patient story cont:
I know that vitiligo is a far greater cosmetic affliction for black and brown people. In fact, I feel guilty for complaining or becoming distressed when people say, ā€œBut I canā€™t see it.ā€ Though often said with good intentions, such dismissals compound my distress because they gaslight me and incite guilt. Besides, it is noticeable. Ask the gastrointestinal doctor who pointed it out to his students when trying to figure out why I perforated my colon. Ask the cosmetician trying to sell me foundation not knowing which skin color she should match. Iā€™m brave. I act like itā€™s nothing, just as I learned to do with my nevus. Then I go home. And then I cry.

People with skin conditions and perhaps other autoimmune disorders often feel tremendous guilt. Have we caused our lesions because our emotions are intense, because weā€™re angry, because we canā€™t handle the normal stresses of life? Has it spread because we donā€™t meditate or do yoga or eat enough kale? John Updike called psoriasis, a condition he hid for much of his life, a dermal sin to which he had to confess. Never mind that we control very little in our lives, our culture demands, indeed, runs on the illusion that we have control if only we would seize it.

Incurable and unpredictable, vitiligo could not have provided a more perfect spur to the anxiety and depressive disorders Iā€™ve had to manage since childhood. My clothes can no longer hide my skin disease. My skin has become a living metaphor.

Upon my dermatologist advise to be strong and try out some approved product >>(drop a message in my inbox to know more)

13/01/2020

PATIENT STORY CONT:

62-year-old Caucasian female patient (Skin Type II)

Born with a bathing trunk melanocytic nevus, all my life Iā€™ve been self-conscious about my skin. Finding a one-piece bathing suit to cover my flank, back, and right upper thigh wasnā€™t possible, but I imagined that the patches of brown that peeked out didnā€™t show. No such luck in locker rooms where, fully naked, I heard taunting as a child and gasps as an adult. I preemptively warned medical professionals after hearing the question ā€œHave you been beaten?ā€ too many times.

But nothing prepared me for the white patches that suddenly emerged in my thirties and that now, in my sixties, cover large areas of my body and face. You would be wrong to assume that as a white woman, patches of nonpigmented skin arenā€™t noticeable or that they donā€™t provoke anguish. Perhaps if I were alabaster white, Iā€™d feel differently, but I think not. To lose color is to be a pale reflection of oneā€™s former self, to lose vividness and vitality. Moreover, in my case, vitiligo is likely a result of my nevus, of my body killing its own melanocytes like Pac-Man scrambling to kill the ghosts before they kill him. In my twenties, I was told for the first time that my nevus could kill me. Vitiligo proves the point. {TO BE CONTINUED......}

12/01/2020

PATIENT STORY

50-year-old African-American male patient (Skin Type VI)

I knew it was going to be a problem when I just finished lunch with a friend and she said, ā€œYou have something on the side of your mouth.ā€ I was working at WABC TV in New York City as the entertainment reporter. I had gone to the MTV Awards. I saw Michael Jacksonā€™s performance on stage. Earlier in the week, I interviewed Whoopi Goldberg for a reprise of a one-woman show. I was 26, in the biggest city, at the biggest station, and on the top-rated newscast. AND THERE WASNā€™T ANY FOOD ON MY MOUTH! It was my skin.

I had been able to cover the small spots on my hands and scalpā€¦ and the one small spot just under my nose. But after eating, the corners of my mouth could not be hidden. I thought the life I had created was over. I didnā€™t know how to react. And with time it got much worse. My Emmy Award winning face was gone. I was a splotchy mix of black and white. And I went through some stages: grief, fear, grief, anger, grief, and acceptance. And let me be clear. ITā€™S BEEN YEARSā€¦ of questioning, emotional struggle, and crazy looks but the truth is a little shocking. This disease has become my blessing.

My name is LT, and I am an entertainment reporter/host in Detroit. I travel the world covering entertainment. I am also thankful to be an advocate for people like me. And I donā€™t just mean people whose skin changes so drastically people question if they should shake your hand or hug you. I mean people who are struggling to exist comfortably and lovingly in their own bodies.

Vitiligo can be a challenge but I have found support and guidance leading to pride for my skin. I have created a life of my own definition. And now, I canā€™t imagine my journey any other way. I have become a more loving and compassionate man. I am embracing the stares and directing the attention, when appropriate, to positive ends.

How do I live with vitiligo? I LIVE! Oh, and by the way, I have vitiligo.

{more stories next post}

Photos from Vitiligo's post 12/01/2020

WHAT IS VITILIGO

Vitiligo is a relatively common disorder that is characterized by depigmented patches of skin. Multiple studies characterize the overwhelming psychological burden that is experienced by many patients around the globe. This review examines personal patient stories and the impacts of age, culture, s*x, race, and ethnicity in relationship to altered self-esteem and quality of life in patients who live with vitiligo.

How does vitiligo start?

Although it can start at any age, vitiligo often first appears between the ages of 20 and 30. The white patches may begin on your face above your eyes or on your neck, armpits, elbows, genitalia, hands or knees. ... Most people with vitiligo are otherwise healthy and have normal skin texture and sensation.

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I was born in Sierra Leone, West Africa at the height of a decade-long civil war there.In addition to loosing both of my...

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