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[bel-mulderleia.livejournal.com]

There is a special on the Discovery Health Channel right now on a show called Mystery Diagnosis about the disease my brother has. The woman whom my family works closely with to fundraise for research for it is on with her family's tragic story. If you have ever been curious, you should watch. It's importaint to raise awareness. It will be repeated over the next few weeks. The episode's name is Blood Brothers.

Comments

[keristars.livejournal.com]

er, what is the disease? some stuff are kind of squicky to watch, but others are interesting

[bel-mulderleia.livejournal.com]

It's called Barth Syndrome.

http://www.barthsyndrome.org

Most of the show was about it, but now they're showing some crazy lady who sees stuff. It's going to be repeated over the next few weeks, though, so if anyone would be interested to watch it I'd appreciate it. It's a rare genetic disease that effects only boys for the most part that still has very little known about it, but it can be fatal. Historically, the great majority of the people who have had it died. They're not sure how long somebody can survive with it, because the only known survivors are only a few years older than my little brother.

[keristars.livejournal.com]

wow, that's a really weird disease. I'm sorry for your brother; it must be difficult for your family.

we've got one of those weird diseases in our family, too, where people grow to insane heights and are super skinny. my dad has 6 cousins all nearly 7 feet tall (they're brothers) and thin as sticks, but they're in their fifties and sixties. my sister seems to have got a mutated form, because she's nearing six feet and is barely 100 pounds.

I hope your brother lives well.

[bel-mulderleia.livejournal.com]

Oh wow. That has to be hard to deal with from a different perspective. It's got to make certain things really difficult.

Thanks for your well wishes.

If anyone is interested in watching it later, it's on:

Dec 11 at 6 PM
Dec 24 at 9 PM (nothing like a depressing as crap medical story to feel like Christmas, I guess....)
Dec 26 at 3 AM

And I think a few other times, too.

[keristars.livejournal.com]

Yeah, except my family's isn't necessarily fatal. The worst side effects are holes in hearts (it's extremely common in my dad's family tree), super-high metabolisms, and bad joints and ligaments because of the height. Well, so far as I remember when I was tested for it when I was a kid.

It's just one of those genetic anomalies that pops up, I guess, like color blindness. Some are just worse than others.

[bel-mulderleia.livejournal.com]

Yeah, it's kind of amazing the things that the human genome seems to spit out. o_o

Thank god for modern medicine.

[weemumlessmngrl.livejournal.com]

I think I watched a show on that once on Discovery Health (my favourite channel~). They had done this procedure on this boy and this girl, though, that made the growth and everything stunt a bit. They were both still really, really tall, but not as much as they would be.. it made their problems with the joints and ligaments and heart so much less, though.