Nicole-Amanda
by Virna

As a mom, I always feel that I have to do whatever I can to make my child happy so that she can become a strong and productive adult but I knew that things in life would never be so easy.

When Nicole-Amanda was eight years old, I noticed her first spot in the inner crease of her elbow and thought it was lack of sun in that area since we had just returned from a vacation trip. She later fell and scraped her knee and soon after it healed, we noticed that the scraped area turned white and so did the exact area on her other knee. I took her to her dermatologist and she was immediately diagnosed as having Vitiligo. The doctor explained that there was no cure and there was really not much we could do.

As time went on, her spots began to get bigger and whiter, and very noticeable during the summer months when she wore shorts and t-shirts. As a social worker, I knew I had to prepare her with coping skills and encouraged her to always focus on her strengths. I did my own research and read that there were certain treatments that can assist with Vitiligo; however, all she was given were topical creams but nothing seemed to work. I tried my best not to make a big deal of it and encouraged her to share what she had with people who asked about it. In my experience, I was really horrified to know that the cruel and ignorant ones were the adults. People, including family members, would ask what I was doing about it and would suggest the craziest things to do to help her. I reached out to other organizations to get more information, however, no one seemed to know much. I did take her to several doctors but got the same answers, more topical creams.

While planning a trip to my native country of Colombia, I reached out to my aunt and asked her to set up an appointment with a very well-known prominent dermatologist to ask his opinion. It was a relief when Nicole-Amanda and I met him because he informed me of everything I read about and actually informed me that although there is no cure, he had a treatment than can be effective. This doctor shared that he treats Vitiligo patients with light therapy and informed that most of his patients who attend consistent appointments obtain positive results. During my stay, we vacationed and went to doctor appointments. Nicole-Amanda was actually regaining pigment and we decided to extend her vacation so that she could continue the light therapy treatment. While Nicole-Amanda stayed behind and went to her appointments with relatives, I returned and searched for doctors who had this machine. To my astonishment, not one doctor I called had this machine, not even the doctors in the NY’s best doctors list, even while she was being treated in a third world country with an American made machine. I was appalled at this finding!! How could doctors in the US not be treating Vitiligo patients?? When Nicole-Amanda returned from her trip, she resumed classes and we went back to our normal routine.

As time passed, all the pigment she had regained, she lost again. It was the following summer, when she was going to begin summer camp, that she expressed wanting to wear a long sleeve shirt. It just hit me like a ton of bricks…how long has she felt ashamed? Embarrassed? I immediately had a discussion and shared that absolutely no one should ever feel ashamed and advised her that sometimes people need to be educated in order to be less unkind. That day she went off with a t-shirt and shorts and I praised her for being a strong young lady. That day I went online and searched for support groups and finally my fiancé found AVRF. He emailed them and then I reached out to Stella. Stella was so wonderful...she made me feel right at home and understood all the feelings I was having and advised me to have Nicole-Amanda read the articles the other children wrote online. Nicole-Amanda and I sat together that evening and after she read all the articles, she was so at ease and began looking forward to participating in the next seminar.

Nicole-Amanda has since grown more confident, educating her class and teachers at the beginning of the school year in order to answer any questions. She met so many children at the AVRF seminar and feels at ease that she is not in this alone. The same year we found AVRF, she began to see a new pediatrician who referred us to a dermatologist who indeed FINALLY had the light treatment machine. Nicole-Amanda went for several months but eventually felt she wanted to live life without any treatment. Since ending light treatment, she has regained pigment in both her knees and most of her elbows…all on its own. We both understand that she can lose pigment at any time but she now lives a better, happier life, knowing she is special for having Vitiligo. Nicole-Amanda has always been a very vibrant and intelligent girl. Today, she is an honor roll student who has achieved so much academically. She will begin a new chapter in her life this year as she enters a very strong academic standing High School in NY. Nicole-Amanda will definitely add uniqueness to all there where she can continue to teach her peers about her special spots.

Thank you, Stella, and all at AVRF for your love and support. You have truly added so much to our lives!

Virna, a very proud mom!