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.Voices of Our Future Application: Your Journey and Vision