Example of Struggle Amidst Disease and Harsh Adversities

Can you imagine if you had to live indoors most of the time because the ultraviolet rays from the sun can kill you? Well, for the past fifteen years this has been my way of living.

I would like to share with you a little of my life story. My name is Fatima Perez. My daily battle with Xeroderma Pigmentosum has helped me to realize how precious life is, and that I should live every moment to the fullest. Even though XP is frustrating at times, it is probably the most significant thing about me and has made me who I am today, and I like that person. Living with XP could have altered my life choices in a negative way; instead, it has made me stronger, enabling me to pursue knowledge of my condition and to become part of a solution for it. Although I have to face many adversities, I keep a positive attitude and I love life!

I am originally from the Dominican Republic but I am very proud of having become an American citizen. I became blind at 20 years of age due to Xeroderma Pigmentosum (XP), a rare genetic inherited skin disease caused by a defect in the body’s ability to repair DNA cells damaged by ultraviolet rays. Because of XP, I live in an apartment with very dim light, tinted windows, and window shades that are down all the time. There is no material that completely protects people with XP from ultraviolet rays, whether from the sun or artificial lights. The ultraviolet rays from the sun could actually kill people diagnosed with XP.  In spite of living with this severe disease, I believe that “I can do all things through Christ who strengthens me” (Philippians 4:13).

Sometimes it is necessary to go out in sunlight because banks, medical offices, and stores are open only during daytime hours. Before leaving my house I apply the strongest sun block available, put on regular clothes, and then I put on a poncho made of two layers of the thickest denim covering me down to my knees. The hood attached to the poncho covers my face almost completely. I wear dark wrap around sunglasses and a hat made of sun protection material with an extra large visor in the front. Finally, I put on gloves to protect my hands. The total weight of my attire is about 5 pounds and this outfit must be worn whenever I go outside, regardless of how hot the temperature is.

From the time I was a little girl, I noticed that something was wrong with my skin and I was different from everyone else. Not knowing anything about Xeroderma Pigmentosum, I lived exposed to the deadly ultraviolet rays for 34 years (23 years on my tropical island and 11 years in the U.S.) without any skin or eye protection.

I finally found out about this disease at a special XP camp in 1998.  I could finally understand why I constantly had open sores on my face, and many keratoses (crusty areas) on my arms and legs. I also realized I lost my vision because of a combination of everyday sun damage and radiation treatments for a tumor on my left shoulder when I was about 4 years old and living in the Dominican Republic. My right eye was removed in 1984 because of the damage caused by these disastrous treatments. My left eye gives me only minor light perception and nothing else.

Through the years, my skin has suffered damage from the sun and I must have surgery often to remove cancerous skin from my body.  People with XP cannot repair UV light damage, and so damage accumulates and skin cancer is the eventual result. In August of 2004, I had three very difficult operations on the same day. The one on my left thigh was a zero stage melanoma. This was my very first melanoma and I feel blessed because melanoma is common among persons with XP and many people develop hundreds of melanomas. Removal of a squamous cell carcinoma inside the arch of my right foot was one of the worst operations that I ever had because, consequently, I was in a wheelchair for 45 days causing frustration and helplessness. I could not take my long walks in the hallway and I missed terribly the ability to dance. My surgery in March of 2011 was much more difficult than my previous surgeries and caused me a short but extremely difficult stay in a rehabilitation home. The inability to carry out daily routines was truly traumatic for me. In every situation I always try to think positively. I remind myself that I am a strong warrior and my future is full of hope.

I have gone through many struggles in my life. When I was living in the Dominican Republic, I was rejected by society because of my appearance. Even an ophthalmologist wanted to kill me with an overdose of anesthesia, just to get rid of me! She told my family that I would die soon from the cancer in my right eye.  Although she had no proof, my family was painfully convinced and had my coffin built. I just found out about this, 22 years later when I went back to the Dominican Republic to visit. Thankfully, the coffin was not needed, although it sat in storage for several months waiting for my death! Thank God, I am still alive, and I believe it is for a good purpose!

Unfortunately, my family was not physically or emotionally supportive. Doctors could not meet my medical needs. My only hope was to leave my country and come to the United States with a medical visa. I had to apply several times before it was accepted and then I made it to America on my own against incredible odds. Every step was a challenge. I had to beg and borrow the money for the trip. Not knowing the English language, I traveled alone to leave the Dominican Republic and I independently arranged for transportation by car, bus, and airplane. Upon arrival in Florida, Samuel Pagan, the pastor of a Christian church, met me at the plane. He and his family were very kind and helpful even though they did not even know me, and soon they had me flying to New York where I was to meet my brother, Miguel, who was living in Connecticut.

Within minutes after arriving at Kennedy Airport, my brother and his wife left me with a broken heart and crushed hopes when he pushed away my attempt to hug him. He asked, “What have you done? Why have you come?” Angrily, he said, “You are blind! Blind people don’t get anywhere. You are a lost cause.  Go home! I will give you the money for any difference in cost. Go back home!” This was a shocking statement for me to hear. He wanted me to leave, even though he knew it might mean my death. After several minutes of verbal abuse, the couple walked away, leaving me sitting on a bench at the airport, crying, disappointed, depressed, hurt and frightened. In addition to my blindness and severe skin condition, I was in a strange country where I did not speak the language. The pain in my soul was more than I could bear. I was living a nightmare. I could not believe that my own brother was treating me with such cruelty. Today, I can say that the grace of God has allowed me to forgive my brother and everyone who has hurt me. “If you forgive those who sin against you, your heavenly Father will forgive you. But if you refuse to forgive others, your Father will not forgive your sins” (Matthew 6:14-15).

After almost half an hour, I heard my brother and his wife coming back. His wife had convinced him that he could not just leave me sitting there. I soon realized I was inappropriately dressed for the weather because I had no coat. My sister-in-law was considerate and offered me her coat, but my brother quickly interfered and said, “No! Let her freeze; maybe then she will go back home.”

At last, they took me to their home in southeastern Connecticut where I stayed for one year suffering the most horrible and humiliating treatment. It was an extremely difficult living situation.  But thank God, I was beginning to make some progress with the help of the wonderful Maysonet family – Adela, Windy, Francisco, and Netty. They helped me receive medical assistance, and they were physically and emotionally supportive. My sister-in-law’s cousin was very kind and because she was aware of the conditions I lived under, she invited me to come and live with her. But in spite of the goodness of her heart and her good wishes toward me, I could not stay because my health was affected by drug problems in the house.

My next living situation was in a home for the mentally and emotionally handicapped because no other place was available. While there, I was attacked by a staff member who almost killed me.  I successfully filed charges against him in the New London court system, thank God.

Despite all the pain and suffering I have encountered throughout my life, I have not allowed XP to become a stumbling block. I live a full life, happy, contented, and I have overcome many of life’s challenges. I have achieved goals that many thought to be impossible, such as: coming to the United States all by myself, learning how to speak and write the English language fluently, and becoming an American citizen. I use a computer with a special software program called JAWS (Job Access for Windows with Speech). JAWS is a screen reader with a synthetic voice. I live an independent life, cooking and taking care of my apartment and myself. I successfully completed my high school education, one of my most cherished dreams! I was chosen as Outstanding Graduate of the year when I graduated in 2004 from the Hadley School for the Blind. In February 2005, in a special telephone ceremony, I was honored to receive a very special plaque and certificate. Words couldn’t express the great joy I was feeling! My graduation ceremony is posted on the Hadley School’s website, www.hadley-school.org

Among other recognitions I have received are:
• The Spanish Community Center, Courage Award (1993)
• Hamilton Park Volunteer Award, presented for outstanding volunteer service (1995)
• Commission Homage to the Hispanic Woman (2014)

I am grateful and privileged for being able to come to the United States, truly a land of hope. I feel blessed for the opportunity to receive help from some of the best in the medical field as well as from local XP support groups.

Although there are XP support groups in many lands throughout the world, it was disheartening to learn that there are no XP support groups in Spanish-speaking countries. XP information is reaching only the English-speaking populations.

My dream is to help others with XP, to encourage those who feel afraid, and to instill hope in those confronted with obstacles or setbacks. I hope to bring a spirit of optimism to many struggling families by sharing my life experiences and a knowledge of XP. Doctors could not comprehend how I have been able to survive so many years of sun exposure and radiation treatments. Many people worldwide are dying needlessly due to lack of information about XP and the severity of this disease. I was almost one of them.  As a survivor, I believe that God is enabling me to help others with my condition.

After many struggles, the only bilingual Spanish/English XP support organization, XP Grupo Luz de Esperanza, has been launched.  It is a dream come true!  We will meet our goals with the support of our volunteers, sponsors, and charitable donations. We will provide resources of education and aid for people who have Xeroderma Pigmentosum and their families to enable them to survive and thrive. We will help people with XP in Hispanic communities worldwide.

Everyday I wake up with my best smile even though daily life seems like a battlefield. I thank God for giving me the privilege of being alive!

May you be blessed with hope.