ROXANNE'S STORY

Hi, I’m Roxanne; I have been affiliated with the AVRF for over 10 years and currently serve on the Foundation's board of directors. I do this because I believe in the work we're doing and want to help ensure I do as much as possible to make a difference in a cause near and dear to my heart. 

I have always wondered why God gave me Vitiligo as one of my issues in life with which I need to deal. It has not always been easy and in fact, even as an intelligent, strong woman, I can tell you I have days where it bothers me to my core or I have anxiety at the mere thought of my spots being stared at. It is winter now in WI but with summer around the corner, this means bathing suits, shorts etc., and I can no longer pretend Vitiligo doesn’t exist. I need to ramp up my defenses to not allow myself to be hurt by any reaction I receive. My Vitiligo self-esteem battle is always there even though I am blessed beyond measure and understand those around me REALLY don’t see spots because who I am shines louder than Vitiligo. Intellectually I understand I am so much more than my skin and I have quit telling people that it doesn’t bother me, when in fact it does. However I will not allow “my skin” to determine how I play in this world.  

Vitiligo patients often receive well meaning, but extremely insensitive “advice.” We can all list the most popular ones: “At least you won’t die from it,” or “Could be worse.”  The sheer audacity of making a statement like that never fails to amaze me. I came to several conclusions as I grew older: Vitiligo has made me stronger and a much more compassionate and sensitive soul; I care very deeply for people, their plight of suffering; and I have had the opportunity to supersede any racial, cultural or other boundaries to share a common bond with my fellow community.

Lastly, I love being involved and making a difference in the lives of Vitiligo families here in the US and all over the world. However, I would not be doing a Vitiligo sufferer any favors by allowing you to believe a cure is right around the corner or even present today. There are many treatment modalities working for some patients, however, research is still needed. The tough love side of me must tell you that if you are suffering, have a child or family member suffering – make a donation. Donations help ensure the disease is known, research dollars are allocated, and we can continue the good fight.

What do I think God meant when he chose me to have Vitiligo? Clearly God meant for our medical community to discover new protocols and medicines, invent medical breakthroughs, etc. I think God meant for us to find a cure for Vitiligo. With any of my efforts, I am hopeful that I am not letting him down. Won’t you join us in building the important work of our organization?

Roxanne

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