My name is Charina Marte. I live in La Romana, Dominican Republic. I was diagnosed with the rare skin disease of Xeroderma Pigmentosum when I was six months of age. I am 21 years old and living my life with this severe condition has not been easy. It is extremely difficult for a person with Xeroderma Pigmentosum to live in the Dominican Republic. The tropical sun of my country is very strong.
It is highly probable that going out during daylight will cause a damaging sunburn even though I wear protective clothing.
When I was still a young girl, I learned that people who suffer from Xeroderma Pigmentosum cannot be exposed to sunlight because our bodies cannot repair the damage from the sun. I was told that the sun’s ultraviolet rays can damage DNA causing skin cancer and eye problems. This inherited skin condition caused many difficulties. I endured painful surgery multiple times. The removal of a cancerous tumor on the tongue when I was only seven years old was my first operation and I will never be able to forget that procedure. That surgery was performed without anesthesia. Only God and I know how much I suffered because the doctor thought anesthetics could not be used in the tongue. The surgery done on my eyelids was another painful procedure; however, I did receive anesthesia for that one. A tumor on my right leg required surgery and two weeks later a tumor that appeared on the right side of my nose had to be removed.
This is only a small portion of my lifetime of struggles because of Xeroderma Pigmentosum. Nevertheless, I am still standing and I am strong. I give infinite thanks to God for being merciful and giving me the strength to endure so much pain. I have so much to be grateful for. I thank my family for their fundamental role in helping me get through anything. I thank my friends for their acceptance and for never being ashamed to be with me. It has been a privilege to be accepted by my community. I am also grateful for Fatima Perez who has been wonderful to me even though we have not known each other for very long. I cherish my friendship with Fatima and I admire her strong faith and
her fierce love of life!
May God bless every person who spares a few minutes to read the story of my
life.
