How possible is it that a cure will be found?

There has not been a cure found yet, but because the biomedical field is growing so fast there is a good chance that a cure will be found soon. There are new things being discovered in the field of biomedical engineering everyday. There are also many foundations and societies that are raising money and raising awareness for the disorder.

Some organizations that can help a family cope with a child that has XP

The Xeroderma Pigmentosum Society (XPS) helps to inform families about the rare genetic disorder, and helps XP families and patients. (Xeroderma Pigmentosum Society)


"The XP Family Support Group is dedicated to improving the quality of life of those affected with xeroderma pigmentosum through education and support services, researching effective treatments, and ultimately finding a cure." (XP Family Support Group)


"The XP Support Group aims to relieve the needs of persons with Xeroderma Pigmentosum and other related conditions and their families. The Group raises funds for research, gives grants for UV protective equipment and products, assists families to attend night time camps in the UK, USA, France & Germany or respite in a protective environment." (XP Support Group)

What limitations does that person have?

A person with Xeroderma Pigmentosum must protect themselves from sunlight. In order to do this, a person must wear clothing that covers most of their skin, apply sun screen when ever going outside, wear eye protection, and avoid as many outdoor activities as they can.

What is everyday life like?

Xeroderma Pigmentosum can really effect someones life. People with XP need to prevent coming into contact with any form of sunlight, so they must stay in doors most of the day. A person with XP must also have frequent check ups with a doctor. These frequent check ups cost a lot of money and take up a good amount of time. XP has many physical symptoms which may cause you to be physically unappealing. XP is a genetic disorder, so there is 50% chance that you may be passing it down to your offsprings.

Xeroderma Pigmentosum is more common in third world countries, so most people that have XP have poor health care, and poor living conditions. XP is rare in places like the United States and Europe.

How can Xeroderma Pigmentosum be treated?

No cure has been founded for Xeroderma Pigmentosum. The one thing someone can do is to eliminate their UV exposure. This will slow down and maybe even stop the symptoms from arising again. An affected person can also undergo frequent skin examinations to prevent and stop skin cancer growths. Most skin cancer growths can be easily biopsied if they are caught at early stages of formation. If the patient is under the age of 20 then they can preform testing for any neurological problems.

What is the life expectancy for someone that has XP?

A person with Xeroderma Pigmentosum has a 90% chance of living to age 13, an 80% chance of living tot he age of 28, and a 70% chance of living to the age of 40 years. When a person has XP their life expectancy is reduced by 30 years.

What are physical symptoms?

The most common symptoms are:

-Severe sunburn after short sun exposure
-Develop many freckles at a young age
-Dryness
-Thin skin
-Solar keratoses and skin cancers
-Eyes easily become irritated, bloodshot, clouded, and sensitive to sunlight
-Premature aging of skin, lips, mouth, and tongue
-Irregular dark spots

How is the XP diagnosed?

This genetic disorder is usually detected while the child is an infant, between the first and second years. If the child receives severe sunburn the first time it is in direct sunlight then this may be a clue to the diagnosis of XP. Xeroderma Pigmentosum is diagnosed when the skin and blood samples show DNA repair defects. This test eliminates other disorders that have similar symptoms.

What are the chances of a person with this disease passing it to their offspring?

A person with XP generally has a 50% chance for passing it down to their offspring. Whether or not it is passed down is depended on their mate's genes.

If the affected person reproduces with a person that has homozygous dominant genes, then there is a 0% chance that their off spring will inherit XP.

If the affected person reproduces with a person that has heterozygous genes, then the offspring has a 50% chance of inheriting XP.

If the affected person reproduces with a person that has homozygous recessive genes, then the offspring has a 100% chance of inheriting XP

How prevalent is this disease?

Xeroderma Pigmentosum is a very rare disorder 1 out of every 1 million people in the United States and Europe have this condition. XP is more common in places like Japan, North Africa, and the Middle East. The world wide frequency of this condition is 1 in every 250,000 people.

What are the possible genotypes of the parent?

Parents that have children affected by XP:

Heterozygous (Xx) and Heterozygous (Xx)

Heterozygous (Xx) and Homozygous Recessive (xx)

Homozygous Recessive (xx) and Homozygous Recessive (xx)

There are no chromosomal breaks, gaps, or rearrangements. There is increased frequency of UV-induced chromosome breaks and sister chromatid exchanges.

How does a person inherit this genetic disorder?

Xeroderma Pigmentosum (XP) is passed down through generations. It is autosomal recessive, so both copies of the gene have mutations. The parents of a child with XP must carry at least one copy of the mutated gene.

What is a Genetic Counselor?

A Genetic Counselor is a person who can help an individual or a family understand their genetic disease and their risks of passing it on to their children. The genetic counselor can make appointments for genetic testing, interpret test results, and talk about other optional solutions and precautions. A genetic counselor works with doctors, social workers, and geneticists. In order to become a genetic counselor, you must finish college with a masters degree in genetic counseling. You will have to study genetic diseases and how they travel through the family. A genetic counselor must have good communication and social skills because they come in contact with many patients throughout the day.