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Stared to Purpose and Fulfilment

I was living a normal life with my beautiful brown pigment till someday in Feb 2005 when my skin color started to turn white spot/patch from my lip to forehead, it progressed fast and I became scared, where I looked forward for help (the hospital), had no patient care or support of any kind rather labeled cosmetic and not life threatening. The public’s ignorance was frustrating and at times sickening, totally neglected and underestimated condition. Main contributing factor to social stigma are, it’s seen as wrath of the gods, confused as burns, mystery, magical and spiritual attack in Africa. I was humiliated, dehumanized and segregated upon; I became traumatized & depressed and wanted to end it all.
I set out to find others to share experiences with, I found people in great need, I ended up being the encourager and in that got encouraged. I was moved to help others live above the challenges and social exclusion. Thus, birth of Vitiligo Support and Awareness Foundation (VITSAF) www.vitsaf.org

Our Mission
To provide extensive public awareness/enlightenment, absolute support and policy changes for vitiligo, skin imperfections, altered images, skin health and autoimmune disorder through entertainment education, support centers, equal opportunity, advocacy & citizen engagement, Communication, Social Media and counseling. We strive to improve overall Quality of Life (QoL) conditions of the distressed through image/confidence building programs and economic empowerment.

My passion for extensive vitiligo awareness grew as I came in contact with shared experiences of individuals living with Vitiligo in my community, on the web, facebook and on our website www.vitsaf.org. I resolved to do anything I could to help those with vitiligo- through extensive awareness and enlightenment.
I got on Facebook in 2008 with high expectations of massive vitiligo awareness, instead I found a set of people comfortable within the vitiligo circle, not out to enlighten or influence public’s attitude nor motivate behavior change. I was overwhelmed with thoughts of how to drive global extensive awareness, and then thoughts about Michael Jackson flashed and stuck. I was working on contacting him when he passed on 25 June 2009. I was sad, yet thus came the thought to commemorate his passing day as World Vitiligo Day. Steve Hargadon, founder of www.vitiligofriends.org had mentioned it earlier, but the idea stalled, I took it up and developed the Vitiligo Awareness Day. It was very welcomed when I announced the campaign for World Vitiligo Day – June 25th online across the globe in March 2011. It was accepted by vast majority though mixed feelings trailed the date. My thinking was simple – the date would resonate within the broader community, albeit unfortunate, its connection to Michael Jackson, whose vitiligo was the most famous and publicly debated case of all time.

It is my dream that extensive awareness/enlightenment will awaken public’s consciousness and willingness to act in health sector to save millions of people worldwide.

I found World Pulse an interesting place for learning, writing, communicate and sharing our stories & to get our cause to the global community.

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Comments

Greengirl's picture

Great Work

Thank you so for much for sharing about the condition known as Vitiligo. Never heard of about it in the manner revealed in your post .

I wish you the very best as you carry on the vision for extensive awareness and enlightenment. I will keep the June 25th date in mind and be on the look out.

All the best!

Greengirl

VITSAF's picture

Am glad you found it informative

Thank you greengirl, am grateful and really appreciate your taking out time to read my story. Please share and help get the world informed

Warm Regards,
Ogo

Improving the Quality of Life of individuals (primarily women) living with vitiligo, skin imperfections altered images and autoimmune disorder!

www.vitsaf.org
www.25june.org
https://www.facebook.com/WorldVitiligoDay
https://www.facebook.com/groups/

That's a good story of yours! You see, the problem you had leads you to found a great thing you couldn't perhaps do if you had not have that problem. Sometimes misfortune is good in our life. Good luck my brother!

THERESE( Maman Shujaa, Drc)

VITSAF's picture

am grateful Therese

Yes I totally believe that it happened to me for a purpose, I really go on thanking God everyday for such opportunity.
I have never been fulfilled as I am doing the work

I think we will have a better Word if we will all tackle the problem anyway we can rather thanc compkaining endlessly.
Thanks so much

Ogo

Improving the Quality of Life of individuals (primarily women) living with vitiligo, skin imperfections altered images and autoimmune disorder!

www.vitsaf.org
www.25june.org
https://www.facebook.com/WorldVitiligoDay
https://www.facebook.com/groups/

VITSAF's picture

Forgot to add

I am a Lady, the lady in the pics. My name is Ogo Maduewesi

Improving the Quality of Life of individuals (primarily women) living with vitiligo, skin imperfections altered images and autoimmune disorder!

www.vitsaf.org
www.25june.org
https://www.facebook.com/WorldVitiligoDay
https://www.facebook.com/groups/

bhavna's picture

Much Needed!

Thank you for sharing. I have been trying to acquire knowledge relating to vitiligo for last half a year. But very less information is available, was trying to know if diet has any role to play in Vitiligo cure or if it could be stopped from spreading. I have just gone through you website and would be grateful if you could forward me the proceeding of 2012 Africa Vitiligo Conference, if possible. You are a brave person and have taken up a great purpose. Keep going. Let me know if I could help anyhow.

Regards
bhavna

VITSAF's picture

Thank you Bhavna

Really great to know that you are aware of Vitiligo and in search of more ibnfo on it.
I strongly believe raw plant based diet helps, most times majority dismisses the case with a statement 'norhinf works', it really helps though not as fast in action as some chemical and clinical drugs. All ihave done to arrest mine from spreading is intake of Vit B12 (2000mcg daily) + Folic Acid (400-800mcg), I live positively and try as much not to worry about anything.
Then daily intake if freshly squeezed lemon juice with warm water, followed by green juice (antioxidant rich foods and phytochemicals and chlorophyl are all very needed).
I've been more interested in correcting whatever is wrong inside than just getting my skin color. It has paid off for me as I have achieved over 80% repigmentatio and still repigmenting........
I will send you the report of the Africa Vitiligo Conference as soon as I get to my laptop.

Thank you so much
Ogo

Improving the Quality of Life of individuals (primarily women) living with vitiligo, skin imperfections altered images and autoimmune disorder!

www.vitsaf.org
www.25june.org
https://www.facebook.com/WorldVitiligoDay
https://www.facebook.com/groups/

Wendyiscalm's picture

The gift is in the problem

Your article is so honest and open. Thank you for that. You are the epitome of the saying

"The gift is in the problem. The opportunity is in the problem".

Keep up the good work and good thoughts. You are necessary.

ubuntu(I am who I am because of who we are together),

Wendy

Wendy Stebbins
Founder/CEO
I AM ONE IN A MILLION Non-Profit Organization focused on helping street orphans and vulnerable children in Livingstone, Zambia Africa.

VITSAF's picture

Loving the saying

I really appreciate your comment, love the saying, yes that shouls've been my title.

Truly coming in contact with vitiligo is my 2nd greatest gift in life. I have seen humans and what they truly areans appreceation of empathy.

Thank you so much. I admire you

Ogo

Improving the Quality of Life of individuals (primarily women) living with vitiligo, skin imperfections altered images and autoimmune disorder!

www.vitsaf.org
www.25june.org
https://www.facebook.com/WorldVitiligoDay
https://www.facebook.com/groups/

Sharontina's picture

Never heard

Thanks for sharing this with us. I too have never heard about Vitiligo before. I will keep the day in mind. I appreciate you openness in coming out to fight for the cause. keep sharing more.

Love

Merlin Sharontina

VITSAF's picture

Thank you

Its always a thing of joy for me each time I educate someone
Please share and encourage pple in your network to please sign our petition on www.25june.org

Warm Regards,
Ogo

Improving the Quality of Life of individuals (primarily women) living with vitiligo, skin imperfections altered images and autoimmune disorder!

www.vitsaf.org
www.25june.org
https://www.facebook.com/WorldVitiligoDay
https://www.facebook.com/groups/

VITSAF's picture

Thanks for reading Sharotina

Thanks so much, am glad you are aware of Vitiligo now
Please share and do help sign our petition please on www.25june.org

Much Love,
Ogo

Improving the Quality of Life of individuals (primarily women) living with vitiligo, skin imperfections altered images and autoimmune disorder!

www.vitsaf.org
www.25june.org
https://www.facebook.com/WorldVitiligoDay
https://www.facebook.com/groups/

Wendyiscalm's picture

Another way to see it

Hi

After thinking about your disease, Vitiligo, I guess I would come to terms with it by thinking of it as my honor badge. Something to be proud of. Not everyone gets to have two colors for skin. I am special Like I would pretend they are stars alll over me. And I would firmly, confidently and eyeball to eyeball walk up to people like they were having the opportunity to meet a star, a special person. Or I would walk down the street like I am a parade God has started for all the people to view.

Wendy

Wendy Stebbins
Founder/CEO
I AM ONE IN A MILLION Non-Profit Organization focused on helping street orphans and vulnerable children in Livingstone, Zambia Africa.

VITSAF's picture

Hehehehehehehe, love that

Oh yes Wendy, thats the spirit, I call mine my white tattoo, its my fashion statement and its surprising that from when I became comfortable with it people have actually walked up tp me asking me how they can get it.
I do what I do because there millions out there who cannot be as bold and as confident as I am with it, it will take some a long while and they need a guide and support to get there...

Personally I came to a point where I came to understand that stares leaves no puncture on anyone, nasty comments will not affect one if one doesnt listen to it....

Self-Acceptance is Key! Cant stop advocating that

Ubuntu

Ogo
Founder/Executive Director
VITSAF
www.vitsaf.org

Improving the Quality of Life of individuals (primarily women) living with vitiligo, skin imperfections altered images and autoimmune disorder!

www.vitsaf.org
www.25june.org
https://www.facebook.com/WorldVitiligoDay
https://www.facebook.com/groups/

Wendyiscalm's picture

Y E S !!!!!!!!!!!!!!!!!!!!!

OGO,

LOVE YOUR SPIRIT AND YOUR STYLE. You show them, girl.

Just love your attitude. Different is good. Flaunt it! I love your point that stares leave no puncture marks on anyone, nasty comments will not affect one if they don't listen".

Keep it up.

Ubuntu,

Wendy

Wendy Stebbins
Founder/CEO
I AM ONE IN A MILLION Non-Profit Organization focused on helping street orphans and vulnerable children in Livingstone, Zambia Africa.

VITSAF's picture

Smiling....

Thanks a lot, I have really learnt so much from it all

One of my favorites quotes is 'Nothing can bring you down without your permission', for greater percentage of what happened to us, we allowed it.

I do not allow societal expectations and demands to drive my life and the day we will all wake up to it and understand that the society really doesn't care but much of interest in self.

Am really humbled by your words....

Thanks for teaching me Ubuntu

So I say Ubuntu

Improving the Quality of Life of individuals (primarily women) living with vitiligo, skin imperfections altered images and autoimmune disorder!

www.vitsaf.org
www.25june.org
https://www.facebook.com/WorldVitiligoDay
https://www.facebook.com/groups/

Wendyiscalm's picture

You are a blessing

Hi,

I love that quote also. You are tough. I like that about you.

I think I can speak for all of us. You are a blessing to all of us here at WP.

Ubuntu(I am who I am because of who we are together),

Wendy

That word "ubuntu" is a word/gift from South Africa. if you google it, you will find info about it from Nelson Mandela, Archbishop Desmond Tito and others. It really says it all. If you could pick one word only to describe everything, who can argue that "that would be the word". Haha. I even have a teeshirt that says Ubuntu.

Wendy Stebbins
Founder/CEO
I AM ONE IN A MILLION Non-Profit Organization focused on helping street orphans and vulnerable children in Livingstone, Zambia Africa.

Wendyiscalm's picture

have just signed the petition

Hi,

I have just signed the 25th June petition as a result of your making this information available on WP. So, you see, you matter and you are necessary.

Wendy

Wendy Stebbins
Founder/CEO
I AM ONE IN A MILLION Non-Profit Organization focused on helping street orphans and vulnerable children in Livingstone, Zambia Africa.

VITSAF's picture

Thanks so much for Signing

Am grateful, thanks so much for signing....
Truth is that I never envisaged such opportunities with WP, I was looking forward to learning more how to write better and communicate our cause and my dream..

World Pulse is indeed a great community and resource center.

Improving the Quality of Life of individuals (primarily women) living with vitiligo, skin imperfections altered images and autoimmune disorder!

www.vitsaf.org
www.25june.org
https://www.facebook.com/WorldVitiligoDay
https://www.facebook.com/groups/

Sarah Whitten-Grigsby's picture

Thank You, VITSAF

Dear VITSAF,

Thank you so much for the information you've given about Vitiligo and your experience with it. I hope that this piece will be widely read on World Pulse and that the continued feedback you get will pull more people into the loop of your very worthwhile organization.

You have fulfilled this Week 2 assignment just as you were asked, with personal experience, a vision for the path to support for others and eye-opening information about a disease many of us know little about.

Keep writing, keep reaching out, and may you stay on this path to making the world a better place.

With Gratitude,
- Sarah, Listener

VITSAF's picture

Thanks so much Sarah

Dear Sarah,
I truly appreciate your comment, its such a great opportunity and avenue to share my story and educate a whole lot of new people.

I have a dream and that is that all people distressed and affected by Vitiligo and altered image will start living normal positive life and not just exist.
I hope you write back as you listen more, I really would like to know when am not getting it communidated out there as I should...

I really appreciate

Warmest Regards,
Ogo

Improving the Quality of Life of individuals (primarily women) living with vitiligo, skin imperfections altered images and autoimmune disorder!

www.vitsaf.org
www.25june.org
https://www.facebook.com/WorldVitiligoDay
https://www.facebook.com/groups/

CeXochitl's picture

Very passionate!

Wow! I was so impressed with your story! I know several people with vitiligo, and the description of your experience with it is so like what they went through in many ways. The isolation, the feelings of doubt...very touching story. I'm also impressed with the actions you took to not only handle the situation on a personal level, but to reach out to others to change perceptions. I look forward to reading more of your work!

VITSAF's picture

Great you understand our challenges

Dear ceXochiti,
Thanks so much for your kinds words, its really nice to know that you can relate with our challenges and have experienced what it gesture to for us and I would add especially the women.

Thanks so much and even as I learn, I will continue to share as the ultimate goal is improved quality of life and mass enlightenment and education of the public

Kind Regards,
Ogo
www.vitsaf.org

Improving the Quality of Life of individuals (primarily women) living with vitiligo, skin imperfections altered images and autoimmune disorder!

www.vitsaf.org
www.25june.org
https://www.facebook.com/WorldVitiligoDay
https://www.facebook.com/groups/

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