Who is Keith Evans and why did he start this site?
I think most people that have vitiligo would prefer not to talk about having vitiligo with most people. It is embarrassing to have vitiligo. I am, at times, embarrassed that I have vitiligo. And this is not healthy for me or anyone else.
I want to talk about my vitiligo, here on this website, so I can meet other people all over the world that have vitiligo. It’s good for me to talk about vitiligo. It helps me to get past the disease and live life without letting it affect me.
There have been times when I have allowed my disease to confine me, to stop me from doing things I like to do. Like going to the beach. I love going to the beach. I like going with people, on my own, with a book, for a bbq…I just like going to the beach. But in my head I would think about having to wear shorts and wearing sandals and taking off my shirt an having people see me with my spots. So I would rarely go to the beach. For a time I stopped wearing shorts. I stopped wearing sandals. I always wore sandals. But because my feet were splotchy, I started to wear shoes. I wear sandals more often now. I have a healthier relationship with my feet.
My hope is that with this website, I can encourage people with vitiligo to live life fully. I want people to shed the shame associated with vitiligo. I also want to be encouraged by people that have vitiligo. I want to hear how people are dealing with it both mentally and medically. I think we can have fun talking about vitiligo. And I like having fun.
I would love to hear from you about your story and any feedback you have about this website and this disease called vitiligo. My name is Keith Evans, and I live in the Bay Area, California.
You can email at keith at i have vitiligo.com or use the contact form on the site.
17 Comments
Great work Keith….the biggest solution to Vitiligo is talking about it, sharing experience.
A woman who cam to our support group meeting for the first time was so amazed that she called me aside and said, imagine how I would have ruined my marriage because of Vitiligo – African belief, she believed hers was mystical inflicted on her by her husband people.
She ended up saying I didnt know my case is nothing after seeing others with severe Vitiligo already embracing it.
There is so much power and impact in supports like this and physical support groups.
Keep up the good work Keith!!!
God Bless
Hey Ogo,
Always great to hear from you. I totally agree with you that the best solution for vitiligo is to be open about it. Remove the mystery. It helps to remove the frustration.
I think it is great the work you are doing. Its, wonderful substantial work to believe in people like you do.
Keep in touch, will email soon.
Keith
Hi Keith,
Your experience strength and hope inspires me today. I am 35 and have been dealing with the devastation of having this disease for about 5 years now. At first it started out as small pin head spots and now they are the size of a 50 cent coin mainly on my hands and feet. I really wish they find some way of managing it that possibly reverses the process.J
Any way will chat soon. Pls keep doing what you doing it really helps me knowing there are people living with vitiligo!
Hey Yusuf,
Thanks for writing in. It is great to hear from people like you as well. I first spot on my thumb really freaked me out. I figured out what it was with 20 mins of internet browsing. I don’t even know how I knew. I guess I knew that the spot was not from anything else and it was probably vitiligo. Then I found out there is no cure form the mainstream medical establishment. It still is hard.
Hope to hear back from you soon,
Keith
Have you ever thought about this? http://www.vitiligo.eu.com/home_english.htm I went and I am on my third day treating myself. I promise to send you before and after when I start to see repigmentation. With this treatment you must email for an appointment. Take the appointment they have. They do not have many. Fly to Germany take a train then taxi to her office stay in Best Western next to her office (very nice not like in US) for two days, get blood tests, sign papers and get cream. I rec. getting a few bottles because they are 80 euros to ship. About 80 euros for 1 liter of cream. If blood tests come back a certain way you get a second cream to use every other night. You go home order low band UVB lights then you start treatment. You can go to Jordan for 21 days with the doctor if you see her for appt. first. She is a good person. I now love Germany. Once you have appt. you never have to go back you just order more cream as needed. It is not cheap but compared to the one med. that worked alittle for me Aldara $700 for a tiny box this is MUCH cheaper! (I have tried all other treatments and met with a specialist about bleaching myself. I am trying this first. It is dangerous to bleach yourself and most dermatoligist will not do it and you cannot touch others for 8 months with it on.)
Hello Keith I m really happy to have came across your site. I am a 33 year old women from Baltimore md . I was found out I have vitiligo a year and a half ago. It started as a small white spot on my neck. I noticed it getting bigger so I went to the dr. That’s when I got the news. In October I noticed it staring around both eyes. I m really having a hard time coming to terms with it. When ever I m out and see someone elese with vitiligo I break down and cry. There are no local support groups that I no of. I would like some info on any support groups that you have came across. Thank you so much
Hi Shante,
I too am glad you found this site. I think it is great that you are struggling with this disease. Keep struggling with it until you get to a place where you don’t stop living because of it.
I have never been to a support group actually. I kinda started one here on the site actually because I need to hear from people like you. It can be hard but you are not alone. You can deal with this. You can thrive with this disease. You are beautiful. You have to help people understand that.
When I see people with vitiligo I try to just smile. Let them know I am so happy to see them out in the world being themselves. If I ever meet you I will give you a smile too because I am happy you are out in the world being yourself.
Best,
Keith
I have had vitiligo since I was about 19 and am now 45. So basically my face is brown and that is it. I have a husband and daughter and people who love me….the me they see and do not see because it seems when you care for someone they are so beautiful to you. I was really searching the web because i want my face to go white now. i wear what i want to wear and definately sandles. I do know kids people have asked inappropriate questions and i have felt humiliated as well over the years. when i met my husband my arms and hands were mostly brown and its just all opposite now. i use a lot of sun screen and just go for life. but at this time in my life i am planning a lap band surgery and want to return to the world whiter but yet a black woman!
Hello Keith. I’m so glad to have found your site. I’m 16 and from Douglasville, GA. I’ve had Vitiligo since I was 13 or 14. Vitiligo runs in my Father’s side of the Family and he also has it, but not as much as myself. It’s very hard for me to not get upset about my spots. I usually try and cover up as much as I can. I go to a Tanning Salon often during the Summer to get a Spray Tan since I can’t get in a Tanning Bed. I feel much better about myself when I can cover up and I know that less people are looking since it’s less visible. I try not to worry too much about it but I feel like it’s consuming me. I’ve talked to my mom about this many times and all she says is that “I’m beautiful and I shouldn’t worry myself to death about it”. I know she means well, but she doesn’t understand how it feels since she doesn’t have it. I’ve talked to the Councilor at school about it, but it doesn’t seem to help. I feel like I’m being stubborn, but I’ve just given up on treatment since I’ve done it for so long and nothing has happened. I just feel alone and different and I don’t want to feel that way. I just wish I was more confident about myself. I know it sounds mean, but I really hate when people come up to me and ask me about it. I don’t like explaining it and at the end of the day I just come home and ask myself “Why did this happen to me?” and I just cry. I know that I would understand and listen more if I was talking to someone who actually knows what I”m going through.
Hi. I am 19 years old and i have been having vitiligo since i was about 5. I have always felt different and I know absolutely nobody who has it. It’s hard to talk to people who don’t have it because they don’t understand. I think it’s amazing that you’ve did this. If you know of any websites where people with vitiligo can connect, please let me know.
Thanks,
Megan!
Hey Megan,
you can check out http://www.vitiligofriends.org/
It is a social network for people with vitiligo.
Best,
Keith
Hello.
I would first like to say that your website is SO encouraging. And mean that, I do.
I am almost sixteen years old, a sophomore in high school.
I woke up one morning in second grade to discover a white patch on my face.
Being human, I freaked out!
Over the years my Vitiligo has developed.
I still struggle with accepting the fact that I’m TwoToned, but having this skin condition I believe has made me a more genuine person.
I have it for a reason.
I still get stares, it’s an every day thing.
Also the occasional, zebra/cow comment is made.
It gets old, but as long as I am living these things will be said!
I am just trying to go with the flow and live life.
People have it off way worse than me.
And that fact, keeps me going. (:
Thanks again and keep writing!
-
Jasmine.
Jasmine,
Hi!
Thank you for writing in with this comment. You are encouraging me! Thanks!
I am going to be 30 soon enough and I know exactly how you feel!
Being human, I still freak out about having vitiligo but not as much. It gets better.
My vitiligo is still developing. Growing new spots of pigment and a lack of pigment. I hate this disease.
I too struggle with having two skin colors. I struggle with the idea that people will judge me less beautiful because I have a disease that gives me two skin colors.
I struggle with a sense of personal self worth.
People do have things worse off than you. Its true.
Its harder I think for you because you are in high school still. It is an intense environment. So many hormones running around.
You are doing great. I can tell that from your writing. You are a good writer and I hope you write often.
I hope to hear from you again because I am encouraged by you!
Thank you!
Best,
Keith
Keith, My eyes are filled with tears after reading much of your website. I am 43 yrs old and discovered that I have vitiligo 1 1/2 years ago. While I try to stay positive, the changes I am seeing in my skin are beginning to shake me to my foundation. The spots are slowly multiplying and growing. I, like you, thought that as long as I didn’t get them on my face I could deal. Well they have started on my face and it is devastating me. It is a slow but sure sadness that wants to take me over. I continue to fight, trying to focus on life, love and family. But it is not an easy battle. It is encouragaging to hear your story and to know that I am not alone.
Hey Marygrace,
Thanks for writing in and letting me know how you feel. I am glad you appreciate what I am writing here as sometimes it is hard for me to. It is hard to stay positive for me. Recently I have noticed new spots on my leg and arm. It’s not a positive realization at all.
The sadness is real. Face the sadness, experience the sadness and understand the source of the sadness. This is what I do. I don’t try to pretend I am happy about this disease.
How to I try to stay happy? Sometimes I smile, sometimes I cry. I hang out with people that are more playful than me, laugh easier than me and smile lots. It’s really helpful to have such people in your life. Also, people that don’t indulge my self pity and respect my sadness encourage me. Yes, they say, it sucks, yes, it is frustrating and yes you are still beautiful and yes people like you and love you and want to spend time with you and appreciate what you bring to life.
Your struggle for a sense of self confidence and self worth is a human struggle. As one philosopher put it we are born between piss and shit and we are going to die. Figuring out what that means is complicated! With or without vitiligo we are all facing the same issues and together we can hold each other up and build each other up.
Would give you a hug if I could. You are not alone indeed and neither am I. Thank you so much for that reminder.
Have been reading this book: http://www.amazon.com/Opening-Up-Healing-Expressing-Emotions/dp/1572302380
Really great stuff. I have found it affirming and calming.
Please let me know how you are doing, good or bad. I want to know!
Best,
Keith
Hi. I am 49 years old and just found out that I have vitiligo. I don’t want it, but there’s nothing I can do about it. Ironically, I went to the dermatologist to have some unsightly skin growths removed, only to find out that the splotches I have on my feet, legs, wrists and neck are vitiligo. These I can live with. It’s the unknown of what will happen next that scares me. Being 49, I’ve seen my skin aging over the years – wrinkles, crows feet, sunspots, etc. Funny how those things don’t seem like anything to be concerned about now.
I have a ginger cat – she has white paws, a white chest, and a splotch of white on her face – just like the areas where vitiligo shows up. Why do variegated coats on animals cause no reaction, but on humans they do?
I also live in the Bay Area and appreciate your posts as I come to terms with this.
Thanks,
Karen
you keith,
You’ve been liebsterd by me!!!
http://www.ihaveuc.com/liebster/
happy thanksgiving buddy!