My name is Silvia Orias. I am Joselin Orias’ sister. She is the youngest of my three sisters who I love with all my heart! We are from the city of Santa Cruz de la Sierra, Bolivia. Joselin is 27 years old. At the age of four, she started to get freckles on her face. My mommy thought that it was something normal as Joselin hardly ever got sick. Every now and then she would catch a cold but nothing else. Over the course of
her growth, the freckles were popping out more and more and she didn’t want us to touch her face. She would not let us take her to a dermatologist because we come from a very humble family and she didn’t want to incur expenses for my mother. During her childhood she suffered many insults from children and people who turned around to look at her, hurting her heart and self-esteem.
When she turned 22, she began to feel burning and itchiness on her eyes and warts were growing on her face. This is what made her decide to seek help. We went to a few different dermatologists who told us that her condition was not serious, that she should only protect herself from the sun. Eventually, she got worse. In search of another doctor who could help us, we met a dermatologist who finally told us that my sister’s condition was Xeroderma Pigmentosa disease. She recommended that she protect herself from the sun, take vitamins and use sunscreen. In December 2018, she developed a growth on her face which she picked and it became fleshy and grew to the size of a grape. That is what made me start looking for more information about this disease. I thank God very much becauseI found the website XP Grupo Luz de Esperanza, and Fatima Perez, who has given us a lot of information about XP and the seriousness of this disease.
When I started watching the videos and stories on her website it broke my heart. I did not want to believe that my sister had this severe disease. I feel so much pain in my soul to see my sister suffer in this way. I feel guilty for not having done anything to help her before. She has already been through surgery on her face which has left scars and emotional pain. This is a battle that is just beginning and even though she has all the support of our family, it is very difficult for her to deal with this disease. But with God’s strength, we will make it! Even though we cannot understand God’s will, we know it is for something better! People who suffer with XP are very special to God because God gives the
hardest battles to the best warriors!
I am very grateful to God for helping me find the XP Grupo Luz de Esperanza organization and Fatima Perez who has given us a guide on how to take care of my little sister.