The Vitiligo Support and Awareness Foundation (VITSAF) in Nigeria

Written by . Posted on August 26, 2010. Filed under International Vitiligo Stories. 4 Comments.

A few months ago I joined the social network Vitiligo Friends, and through the site met Ogo Maduewesi who has recently founded a support group in Nigeria call Vitiligo Support and Awareness Foundation.

From the VITSAF website:

Vitiligo Support and Awareness Foundation (VITSAF) is a new not-for-profit, patient-driven non-governmental organization Incorporated in Nigeria. VITSAF is the very first organization concerned about the needs of persons distressed by Vitiligo in Nigeria and West Africa; relieving the agony of blacks turning white through extensive awareness and enlightenment campaign, educating the general public and through support and counseling. VITSAF derives its existence and emergence as a result of lack of understanding and support for persons distressed by Vitiligo in Nigeria and West Africa where so many assumptions about the conditions holds sway.

It is created to bolster the diminished confidence and low self esteem as well as stigmatisation and segregation usually experienced by persons distressed by Vitiligo.

VITSAF has a passion and is dedicated to improve and Support those distressed by Vitiligo, Create Public Awareness and Educate the General Public about the health condition – Vitiligo.

Our Vision

To achieve a Positive Lifestyle and a Positive Perception for Persons Distressed by Vitiligo and the Disfigured in West Africa by year 2020.

Our Mission

To provide Public Awareness and Enlightenment on Vitiligo through education, entertainment, dedicated work and counseling. We seek to improve the Quality of life of persons distressed with Vitiligo and the Disfigured primarily in West Africa through image and confidence building programs. The Foundation also encourages alternative and scientific research for ultimate cause and cure of Vitiligo.

Our aims and objectives

  • To Identify, inform and counsel Vitiligo patients and their families.
  • To create public awareness and concern for the Vitiligo patient.
  • To enlighten and enthuse those Living and affected by Vitiligo to live positively with the condition.
  • To enlarge the concern for the patient within the medical community.
  • To encourage, promote and fund increased scientific, clinical and alternative research on the cause and ultimate cure of Vitiligo.
  • To make locally available drug and alternative drug that helps Vitiligo and set up local treatment facilities around the country.
  • To set up a Vitiligo Resource centre (for info, help and support)

Currently partnered with: Nigerian Association Of Dermatologist (NAD) and National Vitiligo Foundation Inc NVFI (www.nvfi.org) , VITSAF is working out its mission through fund raising events, providing solid information about vitiligo and its effects and encouraging those dealing with vitiligo.

It is not so different than the intent of my own website:

It is created to bolster the diminished confidence and low self esteem as well as stigmatisation and segregation usually experienced by persons distressed by Vitiligo.

Having vitiligo can be a source of shame and embarrassment. It can be devastating. Only through open discussion, honest opinions and a strong sense of self can the shame and embarrassment be shed. Being able to talk about vitiligo is critical. I am lucky in that I have great friends who have refused to allow me to wallow in self pity and self doubt. Being able to talk with other people with vitiligo and listening to them tell their own stories is immensely important. I am so happy to be able to learn about the work that people are doing around the world to uphold people and fight for a sense of decency in the face of a incurable disease. I am grateful and encouraged by the work others are doing on behalf of people like me.

They are accepting donations online here.

Getting Vitiligo On The Face

Written by . Posted on August 22, 2010. Filed under My Story. 16 Comments.

Recently I have noticed more and more that my vitiligo is working it’s way around my face. This is an unwelcome development. I am aware that vitiligo spreads and contracts over time in an almost random fashion. I have hoped that my face would stay clear of the disease and yet still my fears have been realized.

Slowly, I have developed spots on my neck and around my lips and around my eyes. While it certainly is not something to be happy about, I have come to accept this as a fact of my life and move on. I try to spend as little time as possible thinking about this. No one has said anything; I don’t think too many people pay much attention to my face and its coloration. Still it does bother me. I know it could go away or it could spread further.

If I want I can always cover it with makeup or self tanning creams. I can cover it up no problem. No one would ever notice. And for some reason I don’t do this. I wear sun screen when I am going to be in the sun for a while, but I don’t use the self tanning creams/sprays. Why? Well, I don’t care as much as I thought I would years ago. It’s still my face, no matter how many colors make up my face and I am still me.

Getting rid of vitiligo

Written by . Posted on March 8, 2010. Filed under Getting Rid Of Vitiligo. 33 Comments.

The fingers on my left hand

When you realize you have vitiligo you start looking for a solution, you start thinking about how you can get rid of vitiligo. After your initial research online you learn a couple things: medical doctors don’t know much about the causes of the disease and don’t have any cures for vitiligo. This is frustrating.

What can be done for your vitiligo? Well there are steroids. Aren’t steroids bad for athletes? Yes. There are laser treatments. Oh, wait, your insurance considers this to be experimental. So you can pay out of pocket which means unless you have a considerable income and are willing to spend it by the thousands per month, you can’t do laser treatments. You can subject your skin to ultraviolet radiation and increase your chances of skin cancer. You can do nothing and hope it does not spread. You can dye your skin. Get a tattoo.

Then you start thinking as I did, that maybe, just maybe there is a way to, at the very least manage my disease. Maybe I can change my diet, or exercise more or take some herbs or something. There is a wealth of information from people that would love to take your money in return for a plan of action to cure your vitiligo. I have met several people that claim they can cure vitiligo.

It is overwhelming. For sometime I did nothing. I just put it out of my mind and decided that it was not worth thinking about. While this was not the best attitude to take, I think it has merit. The problem with vitiligo is that is wears on your mind. It breeds narcissism. You can’t stop thinking about what other people think about you. You wonder if someone will notice. You think that you are marred, and ugly. It’s destructive if you allow yourself to constantly think about your disease. You can begin to define yourself by your fears and concerns. So when you decide to not think about how you are going to get rid of your vitiligo, when decide that you are not going to allow yourself to be consumed with the pursuit of a cure for vitiligo, you are doing yourself a favor of sorts. You are not allowing for that narcissism to take hold. You stop yourself from defining yourself by your disease. This is a good thing.

But I think that being aware of the latest developments in skin research and being aware of the ways that you can be healthier and perhaps even actively treating vitiligo is important. You can’t just let a disease take over without a challenge. Perhaps vitiligo is a sign of a more serious problem in your body that may manifest itself at a later date. By treating the disease you may increase your overall health. There will be good side effects from treating vitiligo as best you can. But you can’t allow it to consume you.

I feel as though there is a cure for vitiligo that is related to lifestyle and diet. I don’t know what it is right now and I think it will be fun looking for a cure. That’s the most important thing right now. I want to have fun curing vitiligo.

Vitiligo and Flip Flops

Written by . Posted on February 27, 2010. Filed under My Story. No comments.

I don’t have anything against shoes. I like shoes just fine. But most days I wear flip flops. Flip flops have been my footwear of choice for at least ten years. And then my vitiligo started to spread to my feet.

The patches started with a spot here and a spot there. They grew over time to include wider patches of my feet and toes. At first I could wear the sandals and they would cover the vitiligo patches. The only people that would know about my vitiligo were me and the people I talked to. And then that changed.

Slowly as the vitiligo spread across my hands and feet people noticed. People that I worked with were concerned and would ask. Which was great because it is therapeutic to talk with caring people about vitiligo when you have vitiligo. I generally don’t like to be the center of attention in social situations. I don’t mind when it happens occasionally. And as long as people were nice, inquering about the disorder and then went back to business as usual, I was very comfortable talking about it.

Even so, I went out and started shopping for shoes. I got some nice shoes too and I enjoyed them. The reason I went out and bought a bunch of shoes was because I did not want people to see the white patches on my feet. My hands I didn’t do anything about for a while. But I could cover my feet up. I stopped wearing shorts as much. In fact I still don’t wear shorts as often as I used to because of the patches on my shins and ankles.

About a year and a half ago I started wearing sandals again. Even more often than I had done so previously I wore sandals all the time. With slacks, when going out, staying in, washing the car, working in the yard, helping someone move, whatever I was doing, I was most often wearing sandals. I still wear sandals. I simply decided that it did not matter what someone else thought of my skin. If someone noted the lack of pigment on some areas of my skin then so be it. It has been healthier for me to live without worrying about what someone else thinks. And the fact is, no one really cares. I guess maybe someone has thought, oh thats gross, or what’s wrong with that guy but it really does not matter to me.

My friends refuse to allow me to lament my skin coloration. This has been sustaining. Without people that are able to tell me to get over myself and my fears and know how to actually make me hear them, I don’t know what I would be wearing on my feet. But today, in part, because of some great people I know, I am wearing sandals.

My foot in a sandal with vitiligo showing

I was looking at my thumb…

Written by . Posted on February 25, 2010. Filed under My Story. No comments.

My Left Hand

and I noticed a white spot, right on the knuckle that I could not explain. Trying to imagine what could be responsible for this little spot that was no bigger than the head of a pin, I asked my coworker what he thought it could be. No idea he said and assured me it was nothing.

All morning I tried to think what could be responsible. Figuring that if anyone knew, google would be able to help me them, I did a search for “skin pigmentation.” Pretty quickly I came across vitiligo as a possible explanation for my little spot. It was not a happy discovery. Reading about vitiligo while you suspect you have vitiligo was a strange experience. You learn quickly that vitiligo is not going to kill you. You learn that other than a lack of color, and a sign that you may be susceptible to other auto-immune disorders, there is nothing all that serious from a medical perspective. Or so the literature tells you.

You learn that there is no known cure and that there are a variety of treatments that are effective for some, and not for others. Basically you learn having vitiligo is not the end of the world and there is no end to having vitiligo. I counted myself lucky that I have not had to deal with seriously debilitating autoimmune disorders and dreaded the thought of watching my hands slowly develop more depigmented areas.

3 years after that day I no longer dread the spread of vitiligo. It is something that is happening slowly and I have come to to terms with that. For the past three years I have pursued several different courses of action towards my vitiligo and am now coming around to a new direction. This website will be about that new direction and my experiences from the past three years.

I would love to hear from anyone dealing with vitiligo, whether or not you have the disease or a family member. Found a great way of dealing with vitiligo? I would love to hear with that too! Leave a comment, follow me at twitter.com/ihavevitiligo or send me an email: keith@ihavevitiligo.com