26 August 2014

We all know what ALS is now...what about XP?

XP stands for a really hard to pronounce, truly unique, life altering condition. You can read more about it here. Everyone's been doing this ice bucket challenge to raise awareness for ALS and that makes me SO happy, because when a condition is rare and nobody really knows about it, the pharmaceutical companies don't have too much of an incentive to research and develop drugs for it. It's just not profitable.

There's a little boy that I teach at church with XP. To simplify it, I usually just say "he's allergic to the sun" ..but basically his body can't repair the damage caused by UV rays. Minimal sun exposure will leave him sunburned and blistered. He has to wear sunscreen everyday. His clothes are treated with special SPF detergents and rinses. The windows in his home and car are blacked out. A simple trip to the park requires layers and layers of sun protection, such as a UV resistant hood and gloves. Imagine how hot you would be wearing that while trying to play outside in the middle of the summer! He has cooling vests to avoid heat stroke and the like, but I can imagine it would still feel like you were suffocating.

Like ALS, XP is extremely rare and doesn't get a lot of media coverage. His family is desperately trying to raise awareness, and their plan is to have someone come up with a short, informational video about it. Except they don't know how to make videos (...and either do I, haha). So I thought that maybe one of you might know how? Or know someone who knows how? PLEASE contact my friend Savannah if you do! 


Lex said...

He sure is a cute little boy! Wish I knew someone who makes videos!

Laurie Olsen said...

Wow I have never heard of such a thing! The poor little guy!

Kenzie Smith said...

That little boy is absolutely darling! My mom sunburns extremely quickly and blisters, but not to that extent. She has to wear long sleeves and a hat though. I wish I knew how to make videos because I would LOVE to help out. I could, however, do a post?

The Marcy Stop said...

Wow, thanks for sharing. That seems like such a tough condition to have. Poor kid! While ALS is a devastating disease, I agree with you in that it's equally important to raise awareness of other, often overlooked conditions out there that people are living with.

The Marcy Stop

Alexandra Marie said...

This is so cool that you talk about it. I do research in academia and my whole thesis project is focused on understanding the basics / molecular level of the DNA repair pathway that he is deficient in works. It is great to put a face/story with the disease I think about most days.

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