VITSAF founder Ogo Maduewesi
Our work just started! In fact, we have not even scratched the surface of Nigeria, let alone West Africa, but we are already touching lives positively beyond the shores of the nation. That said, I am more convinced today than I was 2 years ago that help is here for persons distressed by Vitiligo in Africa and that we will do everything within our power, God helping us to bring Vitiligo cause to World center stage improving the quality of Life (QoL) of persons distressed by this condition, disfigured and related conditions.
Vitiligo Support and Awareness Foundation (VITSAF) was born out of my personal experience living with Vitiligo and thus three convictions that aroused from my experiences.
VITSAF’s first role is to educate the general public through extensive education, awareness and enlightenment campaign for better understanding of Vitiligo. We offer enormous support to persons living with Vitiligo (primarily in Africa) through support groups and a Vitiligo Resource Centre.
We also work to increase the concern and awareness for patients within the medical community, make helpful medication for Vitiligo locally available and ultimately set up a Vitiligo Treatment Centre.
Secondly, VITSAF’s program Empowering the disfigured is designed to assist all persons with appearance differences to have a positive self-image and self-esteem so that they can live meaningful positive lives and contribute positively to our region.
Thirdly, VITSAF works to increase the understanding of autoimmune disorders. Vitiligo is an autoimmune disorder amongst so many other conditions like Lupus, Arthritis, Diabetes 1, Alopecia Areata, Psoriasis and so many others. Autoimmunity is a result of a misdirected immune system that causes one’s own immune system to attack itself. We will help alleviate suffering and the socioeconomic impact of autoimmunity through fostering and facilitating collaboration in the areas of education, public awareness, and patient services.
My vitiligo journey
My VITILIGO first presented itself someday in Feb 2005, when I woke up with the right side of my lip turned white. I gradually developed some white patches on my forehead, arm, and neck all to my right side; I had no idea what was going on, but was not too worried… Read the rest of Ogo’s story
Michael Jackson (MJ) and Vitiligo
From when Michael Jackson stated he had the skin condition Vitiligo many people have heard of Vitiligo, now his death has even made more people aware of Vitiligo, but very few people really do understand this skin condition. There is need for better understanding of this condition which affects quite a number of people globally including Nigeria and Africa who are misunderstood and segregated; often stared at with nasty and unfriendly comments leaving them miserable.
MJ was called names for turning white out of a condition over which he had no control; like most of us with the condition he was misunderstood and are victimised. The argument is still on as to whether he really did have Vitiligo or not, I personally believe he did have Vitiligo and that he went for a treatment option called Depigmentation (you can read more about it here). This is a common treatment for persons with Vitiligo and one many are currently undergoing.
I brought MJ’s case here because it is an example of how complicated vitiligo can be. Many of us with the condition blame him for not using his celebrity to do anything about vitiligo before his death, yet his battles with the disease was so public and a constant reminder of how ‘visible’ vitiligo can be. Finally, MJ’s case is a reminder of how are many of us living with the condition and the extremes we’ll go to hide our vitiligo. MJ in all his fame and popularity never stopped being human, thus our Advocacy for World Vitiligo Day – June 25th in memory of MJ.
How informed are you about Vitiligo?
- What have you done and what do you know about your condition – Vitiligo?
- How healthy is your lifestyle?
It’s true that treatment of vitiligo has proven challenging for physicians and no definite cure is currently available. I also know fully well that the emotional impact of living with vitiligo can be a huge challenge; it’s not an exaggeration to say that it can feel hopeless, but do we now dwell on this and live in misery the rest of our days. We can get as much information as possible to help ourselves take certain sensitive decisions concerning this health condition. Living in denial and lying to ones’ self, rejecting and cancelling what already is has not helped anyone. I think it’s better for us to face reality, accept the fact that we are vitiligo victims and then choose a positive approach which could be combination of spiritual, alternative therapy, nutritional supplements, clinical and positive living than lament, withdrawn and seek for pity.
