Introductory Speech for World Vitiligo Day meeting

        

your ultimate vitiligo resource

 

INTRODUCTORY SPEECH FOR VITILIGO DAY


Good afternoon everyone. When my dermatologist asked me last week if I would speak at a World vitiligo Conference I was slightly humoured and a bit taken a back. First and foremost I only found out last week that the faint white patches on my legs and hands were signs of Vitiligo and I was given the treatment plan options.

After leaving Drs rooms I was overcome by a number of emotions the first being frustration and anger that I had what in my mind at the time was a disease that made parts of my body appear “ugly”

I returned home later in the day and informed my husband that my suspicions were right and that I did indeed have Vitiligo. Naturally he was taken back by the prognosis mainly because he had no idea what it meant. After I explained that it meant that my skin was ________________ he looked at me quite amazed and said: “SO what!” At first I was furious that he didn’t sympathise with my “prognosis” I expected more “sympathy” I suppose!

I’m a drama teacher and performer and dramatics have always formed part of my DNA. Now Vitiligo was also part of my DNA and for a small moment it defined me! Then it hit me… My father was completely blind from the age of 6 months. He became the first blind man in South Africa to obtain 2 degrees from UCT and was famous throughout SA in the 60’s and 70’s as a well known musician. I know better than this I thought! Disability’s and disease do not need to define our future. Perceptions define us. Everyone sitting here today is fighting a battle of perception. Our own perceptions make us feel like we need to cover up and hide the white patches on our bodies. We are afraid of what the outside world sees. We assume that it has some bearing on how we succeed or perform in life. But it doesn’t! We don’t need to change, society does! We need to fight against our daily interactions being based on outward appearances and focus on our inner beauty and strengths.

When I read that an estimated 100 million people in the world are affected by Vitiligo I was shocked! Where are all these people? Why is it that when I was first diagnosed it felt that I was the only person in the world that had this what I perceived “disease?” Where are they hiding?? I guess Vitiligo sufferers are covering up and avoiding the public eye because despite these staggering figures worldwide awareness and knowledge of vitiligo is often rather inadequate and several misconceptions prevent a correct approach to the disease; moreover, in many countries vitiligo is even confused with leprosy. On further reading I realised that while Vitiligo is not life-threatening it has heavy psychosocial impact on the quality of life of sufferers. Depression, anxiety, social embarrassment and self-consciousness caused by vitiligo are very frequent, and the disease usually leads to a highly significant decrease in the quality of life in sufferers .

It is however time for sufferers around the world to step out and stand up for the disease and show society that beauty is not just skin deep. The more people see that Vitiligo is very much part of society the less stigmatisation will develop.

Just think had blindness caused its sufferers to go into hiding artists like Andrea Boccelli or Stevie wonder would never have been heard.

What is your Vitiligo preventing you from achieving?


This article was submitted by a patient, to be read out at the Support Group Meeting in Durban, on the occasion of World Vitiligo Day.