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Pakistan - Hello and Hi everybody,
December 2010 - To: Valarie - From: Kerusha - South Africa says:
April 22, 2009 - Sabrina, Chicago, IL
Girl it is ok to vent, let it out! Just know that you are beautifully made. And I now think that everything happens to us for a reason, sometimes the reason is just not obvious. Let me share something with you, when I first got the diagnosis, I felt myself going into a deep and dark depression. Now this is from a woman that LOVES the LORD with all my heart, I was raised in a God fearing home, the whole 9yrds. I did not understand why this is happening to me. I felt like this was somehow my fault, or punishment for something I did in my past. I questioned God as to why he placed this burden of all things, on me. And I was almost at the point of giving up.
Valarie the day before I wrote my very first email to you, I wrote out my suicide note and my last will and testament. I had decided that if this disease got to the point that I could not take it, then I would take the easy way out.(I was ready to commit the ultimate sin) I felt my quality of life was more important, and with vitiligo I saw it as a death sentence. This was my thought process almost a month ago to the day. I was scared, confused, angry, angry, angry, hurt, sad, scared, scared and scared!
Then I found your website and met YOU! And Valarie I don’t know if you have a direct link to GOD but whatever you did or said in your prayer for me worked a miracle. You pulled me off the edge of the cliff, just as I was ready to jump. Your encouraging words were proof that LIFE GOES ON WITH VITILIGO! You encouraged me to hang in there a little while longer! To be strong and know that GOD is in and will always be in control. When I saw your picture on the internet I saw a beautiful woman, living and doing great things with vitiligo. I feel stronger because of YOU. (I HAVE TO STOP NOW BECAUSE I’M AT WORK AND I’M STARTING TO CRY. (SO NOT SEXY) lol. I just wanted you to know that, and I understand that it’s hard not being able to do the things you use to do, or the way you use to do them, but think of all the new and wonderful things that you can do as a result of this disease. Take solace in knowing that vitiligo helped you save a person’s life. MINE!
Feb. 23, 2009 - Robert (London, England)
My name is Robert, I have recently been using the social networking site ‘Facebook’ as a forum, I created a group on there which has in excess of 300 members who all join in discussion about vitiligo and their own personal experiences. Having vitiligo myself I know that being able to talk to someone else who understands and realising that I wasn’t alone was great help. It was through Facebook that I saw the note from your Son about vitfriends.com. I have looked at your site and can I say that you have done an amazing job getting everything set up.
If I can I would like to give you some background on myself. I first developed vitiligo at the age of 2; it was presented as a small triangle above my belly button. It remained as that for 5-6 years. It was then that I was really affected. I lost 70% of my pigment in a very short space of time. I was here that I learn something that a child shouldn’t really think ‘Life can be cruel’. I was lucky that my Medical Practitioner knew (only a small amount) some information on vitiligo and I was referred to a specialist.
From here I was given some Topical Steroids to use. These had no effect on my vitiligo, however they did cause my shins to bleed a lot during football (soccer). So on my next visit 4 months later I was taken off those creams and tried on another cream (a trial cream) which my mum gave permission for me to use. Once again no results. By now I was around the age of 8 or 9, I had been on holiday and was devastated by the way people including adults reacted to my skin (for the next 5 years on holiday I would wear long trousers and a long sleeve top, even on the hottest of days) My confidence had gone completely and I was heading downward in a destructive spiral. I began to stop communicating with people, I bottled everything up inside. I cried myself to sleep for a number of years.
I think the worst part for me was trying something I believed would make me better, and then seeing that nothing worked. The next recommendation for me was a treatment known as PUVA which I am sure that you are aware of. I went for the consultation and they then showed me the goggles that I would have to wear 24 hours after treatment. Straight away my answer was NO. I was only about ten at the time. I said to my mum, people look at me enough already why would I want another reason for them to do so. Once again another possibility taken away from me. My hopes were finally crushed.
The next major event that was coming up in life was my 11+ Exams to move on up to secondary school. Unfortunately the night before those exams I attempted to commit suicide. As you can probably guess my exams did not go that well. However from here onward was slowly the start of a change in my life. I went to a group called ‘Changing Faces’ where I received one on one sessions, creating my tool box on how to deal with people who don’t understand. In theory it was great however in the real world things aren’t always as simple. I did gradually adapt these to my own personality and way of thinking. They did tell my mum about a group called the ‘British Red Cross’ who are a free service offering camouflage. This was something that I went to and initially liked. I saw a normal leg and torso when I looked in the mirror. I felt a brief moment of happiness. The next years holiday I wore the camouflage, for 2 days. I woke up the third morning and I said to my mum, I don’t want to do it. I said why should I have to cover up. It’s not me with the problem I am fine its them. To this day neither me or my mum know what changed in me that night. But as they say it was the start of the rest of my life. From that day on vitiligo and treatment were never mentioned in the same sentence.
Then when I was 15 my friend Harry invited me away to Florida with his dad. Of course I accepted. It was here that I finally decided I know what I’ve been told by doctors, about the risks involved with sun. I decided no they were wrong. Everyday I was in shorts and no top. I wore no sun cream. I admit my patches went a rose colour. But something happened. I repigmented to 40% in 2 weeks. Not to mention the confidence I had. That hole holiday, I would talk to pretty girls on the beach. Which taught me something else, vitiligo doesn’t make someone ugly unless they let it. I would chat away and if any asked about my vitiligo, I explained what it was and they were fine with it. That holiday changed my life, I got home and my mum was amazed to see the difference in pigment and in me. I was smiling and not just one day, but all the time. She was also amazed at the clothes I had bought. I bought a bright yellow pair of combat trousers (which I still own and to this day remain my favourite piece of clothing) and many other weird and colourful clothing.
I had finally fully embraced my vitiligo as a part of me, I actually thought to myself. I like the attention I get, people staring at me. This is where the clothes came into play. So that even when I’m covered up people still stare. For a 15 year old I think that was quiet an achievement. My confidence then went through the roof. I was no longer afraid to expose myself. I stared to get into relationships with girls, I would play football in just shorts. I even began to volunteer at the Vitiligo Society taking part in a DVD we produced about vitiligo.
Since then over the years my mum would take me away to hot places and gradually my vitiligo is still getting better, I am now only 20% covered (if that). I am now 20 years old, just over a year ago I proposed to the woman that I love, and she said yes. Not only that but we also now have a 4 month old baby boy. Throughout my life even after having accepted my vitiligo I was still worried that no one would want to settle down with me and have children. I was wrong, she supports me in everything that I do and I could not ask to blessed with anything more beautiful than my son, he is such a happy baby always smiling and playing. He even sleeps through the night. Even after those days that go on, I get home and one smile from him gives me such a boost. And the best thing about my life is, I wouldn’t change having vitiligo if I had the chance to. I honestly believe that my vitiligo has given me the compassion and love that I have for all things, I have not one nasty bone in my body, and I also believe that my vitiligo has given me the confidence that I have. All my friends and Family tell that I am Vein and that I Love myself. I say to them back ‘and’ I do love myself I think I am beautiful and I think that everyone else is beautiful. And the only thing in my life that I can put all that down to is my vitiligo.
I now work for the society and I hope to eventually be able to talk to (not council because I don’t agree with the term) young people with vitiligo, I want to be able to relay my experiences to them so that they know it’s not the end of the world, there is a very small percentage of people out there who are genuinely nasty people, everyone else is quiet accepting. I want them to know that they can find love. But it is all about believing in yourself. As long as you see your vitiligo as a good thing then it doesn’t matter about other people.
I am sorry for having typed so much, I hope you took the time to read it as I like to be able to share my experiences. I was mainly writing to start correspondence, I believe that eventually we will be able to get a forum going, which is accessed by members of vitiligo groups etc from around the world. On facebook alone there are 4 groups. If there was one big forum, with different topics obviously. Could you imagine the potential in that. I believe so many people would feel better about themselves and their lives with vitiligo.
Thank you for taking the time to read this, and I hope to hear form you soon,
July 10, 2007 - Vera - My Vit is getting worse on my face, my arms are almost completely white, my legs half brown, half white and my torso almost completely white. I've almost gotten to the stage that I'm going to stop wearing make-up on my face. It doesn't last all day and what the heck, the rest of my body is white. My grandson and I went to Ravinia with our "Grandparents raising grandkids group" saturday and he said he noticed people staring at me. I guess that's the first time he noticed it. He's 13 years old. He said to me why do people stare at you? How would they feel if people stared at them? He loves me unconditionly and that's all that matters.
From: Jackie - Dallas, Tx - HI, I TO HAVE VITILIGO, AND I AM HAVING A HARD TIME DEALING WITH IT. I HAVE 2 CHILDREN AND A GRANDBABY, ON THE WAY AND I CAN'T GET A JOB FOR NOTHING. I KNOW THAT MY CONDITION PLAY A BIG PART IN IT. I DO NEED SOMEONE TO TALK TO, WHO UNDERSTAND ME.AT TIMES I FEEL LIKE DOING THING I KNOW I SHOULDN'T BE ,THIKING OF.I DO FEL LOST A LOT.
Moressa - St. Thomas, United States Virgin Islands
I am so glad that I took the time to visit your website. I never really knew much about this condition, but now I know. God is good and God is great and he WILL take care of you. I Love you always no matter what you are my sister.
Rev. Mark Williams - New York, NY
It was interesting and informative to visit the website. Know that it doesn't matter to me what you look like, you will always be loved by me and our family. You can count on loving support from your cousins in New York cause girl you are the bomb.
Herman - Boston, MA (Bank Director)
"The ultimate measure of a man(WOMAN) is not where he/SHE stands in moments of comfort and convenience, but where he/SHE stands at times of challenge and controversy." --Dr. Martin Luther King, Jr.
Betty - Paducah, Kentucky "We Might as Well DANCE"
Life may not be the party we hoped for, but while we are here we might as well dance.....
"In the end, it's not the years in your life that count, it's the life in your years." - Abraham Lincoln
Our GOAL is to Educate and to ADVOCATE......
Well known recording artist Mary J. Blige, in an interview with Essence magazine in August 2010 made this statement:
"You're all you have. If you don't think you're beautiful, no one else will."
Please read this story and share your thoughts with us:
BIG....NEWS!!!!! - 1 Samuel 16:7
For the LORD seeth not as man seeth; for man looketh on the outward appearance, but the LORD looketh on the heart. Amen!
Live GODS perfect will for your Life ...He knows what that is ...So, you just....LIVE!
Take a moment, look in the mirror and Say......"Today, I declare that I am BEAUTIFUL!"
If King David in the Holy Bible said it...I can say it too....... and so can YOU! This is what he said.......Psalm 139:14 "I praise and thank you GOD because I am BEAUTIFULLY AND WONDERFULLY made."
Also Remember that - GOD does everything well!
If the world can't see our outward BEAUTY - Let's make sure they see the inward BEAUTY!
We are special to GOD....
If God had a refrigerator, your picture would be on it. If he had a wallet, your photo would be in it. He sends you flowers every spring and a sunrise every morning. Whenever you want to talk, He WILL listen. He can live anywhere in the universe, but HE chooses your heart…Face it, VITfriend - God is crazy about you.
Live your best life NOW.....Just like our Vitiligo Friends of North Carolina.....June 2011.
Someone will always be prettier.
Someone will always be smarter.
Some of their houses will be bigger.
Some will drive a better car.
Their children will do better in school.
And their husband will fix more things around the house.
So let it go, and love you and your circumstances.
Think about it! The prettiest woman in the world can have hell in her heart.
And the most highly favored woman on your job may be unable to have children.
And the richest woman you know, may have the car, the house, the clothes~~~~
but maybe lonely. The BIBLE says, "If I have not Love, I am nothing."
So, again, love you. Love who you are.
Look in the mirror in the morning and smile and say,
"I am too Blessed to be Stressed and too Anointed to be Disappointed!"
REMEMBER: "Winners make things happen~~ Losers let things happen."
"To the world you might be one person,
but to one person you just could mean so much."
Dorothea - Boston, MA (College Professor)
Good motto to live by ...."Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, Champagne in one hand - strawberries in the other, body thoroughly used up, totally worn out and screaming WOO HOO - What a Ride!"
I love this site. You have found an outlet for your pain and you use poetry. I to have vitiligo and are seeking on-line friends to talk to. So if any one wants a new friend just e-mail me at the above address and I will get back in touch. Lets stick together and help each other until a cure is found. One kind word or smile can brighten some one day.
From: Sterlena Williams
Thanks for this site. I too have had vit for 53yrs I am completly white , I completed my turn when iI was 50yrs old no medicine just the Lord Jesus Christ. I am 66 yrs now.
Hello to my new Vit Friends. I am glad to be apart of wonderful group of people. A unique people. God is about being creative and we are the canvas in which he does his work. God\'s Got It.
your website is very interesting, I love to read every single page in here. I am 33 live in Boston, MA, married and have 1 daughter. I got vit when I was 12.
I am a 32yr old F. with Vit for about 4 yr. Mine started with a little patch in one finger and has prograssed a lot since.Part of my career intails drawing blood so it was difficult getting it on my hands. Some people ask if I got burned because I am brown P.R. I guess I have come to terms with it cause I have no choose but it can still be embarassing and makes me depressed at times. It is a comfort to know I am not alone in this feeling. Thank u for sharing all your stories. Maybe God will bless us with a cure soon!
FROM: Hunnee (Pat)
Great site Val. We can't let vit get us down. I try to keep an upbeat positive outlook . I notice people tend to look past the spots and patches because I am very open, approachable and most of all happy. I have been blessed in so many ways by the Almighty. I give thanks every day for my life, my friends and family. If anyone wants to vent, rant or just talk please feel free to email me. LIVE LIFE LIKE YOU MEAN IT!!!