Inc. (XP Light of Hope Group)
All Operations Are
None Of Our Members Are Compensated Monetarily
We provide support and educational resources in English and Spanish. Our mission is to increase public awareness about XP worldwide, especially in the Spanish-speaking countries where resources or information about this disease are extremely scarce. Persons with XP look to us for suggestions on everyday living.
Fatima Perez is the founder and the “heart and soul” of this organization. She is what makes this organization “special”. Her words and accomplishments are an inspiration.We are the first (and only) bilingual English/Spanish support organization for people living with XP..
Southeast Connecticut
Eye Care, LLC
About Fatima Perez
The organization XP Grupo Luz de Esperanza was established for the betterment of those individuals affected by Xeroderma Pigmentosum (XP) and their families.
- Fátima Pérez
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Research of Xeroderma pigmentosum (XP)
Inheritance
Two factors combine to cause the abnormalities in XP:
First, a person inherits traits from each parent leading to an unusual sensitivity to the damaging effects of ultraviolet light.
Second, exposure to the sun and UV light leads to changes. XP is a recessive condition; a person must have two XP genes (one XP gene from each parent) to develop the disease. Recent advances in understanding XP make it possible to test if someone is a carrier of some forms of XP by analyzing DNA.
Symptoms
Many persons with XP will get unusually severe sunburn after a short sun exposure. The sunburn will last much longer than expected, perhaps for several weeks. This type of sunburn will usually occur during a child’s first sun exposure, and it may be a clue to the diagnosis of XP. However, some people with XP will not sunburn more easily than others, and the disease will be undetected until unusual skin changes appear after much time. Most people with XP will develop many freckles at an early age. Continued sun exposure will lead to further changes in the skin, including irregular dark spots, thin skin, excessive dryness, rough-surfaced growths (solar keratoses), and skin cancers. These skin changes resemble the skin of elderly people who have spent many years in the sun.
Cause
Laboratory tests indicate that sunlight is the major DNA damaging agent to the cells of persons with XP. Tobacco smoke (and some drugs) can cause similar DNA damage. People with XP should avoid exposure to tobacco smoke. People with XP should not use tobacco products because they may be at greater risk for developing lung cancer.
How it works
We provide support and educational resources in English and Spanish
Sleep Out Covenant
Your voluntary contributions are tax deductible. We are a 501(c)(3) charitable organization.
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Your efforts, support, and contributions will improve the lives of children and adults living with XP. Thanks for your help!
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We invite you to support XP Grupo Luz de Esperanza with a financial contribution or by volunteering. Work with us. We appreciate your generosity. Please contact us if you wish to contribute to the organization in any way.
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Get to know us a little better. Learn about our mission, our goals and objectives, and how to be a light to others.
Multiple Events & Conferences
The XP Grupo Luz de Esperanza, Inc. (XP Light of Hope Group) is a 501(c)(3) nonprofit charitable organization registered in the state of Connecticut. The XP Grupo Luz de Esperanza was founded in 2012 by Fatima Perez who lives with the disease.
Featured Stories
Katherine’s Story
My name is Ruth Ortiz. I am a mother of Dominican origin and I want to tell you a little bit about my beloved daughter, Katherine Maciel Ortiz. She suffers from a terrible disease called…
Susana’s Story
My name is Susana Herrero Molina. I am 30 years of age. I live in Zaragoza, Spain. I developed the disease of Xeroderma Pigmentosum at four years of age. My life with Xeroderma Pigmentosum has…
Disclaimer: Please consult with your dermatologist concerning the suggestions made on this website. What may work for one individual may not work for another one.