Parents & Caregivers
Apr 2, 2015
1 min read
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 available about XP.
The most important thing to know is that you are not alone. XP does affect hundreds of people each year. The Xeroderma Pigmentosum Society is here to help you. You have an extended family of people who know what you are going through and are here to help. On this blog you'll find postings, articles and information about XP, symptoms and tips to make living with XP a little easier.
The detail that stuck with me is how Camp Sundown flips the usual schedule so kids can play outside at night. For a family dealing with XP, that kind of normalcy must matter as much as the medical care. Do parents get much chance to connect with each other during camp, or is the focus mostly on the kids?
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