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.