Xeroderma pigmentosum (XP) and Trichothiodystrophy (TTD) are called DNA repair disorders. This means that your body has trouble fixing damaged DNA. In XP the damage is caused by UV light. There are a number of other DNA repair disorders. Cockayne syndrome is one. 

Lots...

April 8, 2015

 

The phone rings, and the receptionist tell us Katie is on her way. Right away the staff goes into the routine of closing blinds, hanging sheets over some windows and doorways, and turning off lights. Katie arrives all wrapped up, wearing a full face visor, and is brou...

April 7, 2015

While total avoidance of ultraviolet light sources is the most important practice for the XP patient, the following tips gathered from XP families will help in other areas of day-to-day living. Please feel free to send us more so we will share them. As always, please c...

April 7, 2015

 

 

Intro:

 

Civilization here on earth took off around 6,000 years ago. Where? Not in the arctic circle! Indeed, human societies tended to locate in warm regions when they enjoyed year round sunlight. Living outdoors for the most part is what we were designed to do.

 

Livin...

April 2, 2015

 

Xeroderma Pigmentosum (XP) is a scary diagnosis. It is considered a "rare disease" because it affects so few people each year. This means that it doesn't get as much attention or funding as other diseases. It also means that there's not as much information availab...

May 1, 2014

 

Symptoms

 

Wide range of symptoms:

 

Blistering or freckling after minimum sun exposure

 

Premature aging of skin, lips, eyes, mouth and tongue; with significant increased incidence of cancer in these same areas

 

Blindness resulting from eye lesions or su...

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ADDRESS

437 Snydertown Road

Craryville, NY 12521, USA

 

Telephone: (518) 929-2174

 

Email: xps@xps.org

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Getting a rare disease diagnosis is terrifying for patients and their parents. You are not alone. We are here to support you and help you find the light in the darkness. The XP Society is a unique to the world program for children and families who can never be in daylight. We help provide the XP family support, information and the informative foundation on which to build a healthy and happy quality of life.

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