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Introducing myself- xeroderma pigmentosum mama

post #1 of 3
Thread Starter 

Just wanted to say hello and introduce myself. I spent a lot of time on mothering a few years back, but haven't really been on here much at all in the past few years. 

 

My 14 month old son was diagnosed with xeroderma pigmentosum in April 2012. Short version- it is a rare genetic disorder (about 1000 people in the world with it). It is in the category of DNA repair disorders. Acutely, sun exposure causes severe burns (half an hour of sunlight late in the afternoon gave him 2nd degree burns over 18 percent of his body and put him in the hospital for 5 days), and long term, all damage caused by UV is permanent, giving him a 10,000 increased risk of some forms of skin cancer, and 1000 increased risk of some other forms of cancer.  With his specific type of XP, he also has a 50% chance of neurological deterioration that can be anywhere from learning disabilities or ataxia to death, and can start anytime from infancy to adulthood. 

(For more info his website is www.pacificnights.org

 

It's a pretty isolating disease, since most public places aren't safe for him (fluorescent and halogen lights also give off UV, in addition to sunlight). I used to do the online forums thing a lot and found friendship. I'm back in the state I grew up in right now (and had sworn I would never live in again) due to a complicated custody battle that I don't feel comfortable posting about publicly, and I think making some new connections, especially with people who can understand at least some of the challenges of kids with special needs, would be really good for me. 

post #2 of 3
I "think" I remember you from the adoption forum. I'm sorry that your baby has a serious disorder. I can't imagine how that impacts your life. (((HUGS.)))
post #3 of 3
Thread Starter 

Yep, Polliwog, that was me! You are involved with Reggio as well, right? How have you been doing?? I mostly left mothering after my adoption fell apart. My 'usual haunt' of the adoption forum wasn't relevant anymore and real life became rather busy. I think it will be a good outlet for me now though. 

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