Rare disease requires blue lights...

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http://news.yahoo.com/s/ap/20070519/ap_ ... light_kids

I found this terribly interesting and tragic.

The whole thing reminds me of such common issues as diabetes: It's something that's produced or introduced in the system according to plan, but doesn't get removed as it's supposed to. In the case of diabetes it's basic sugar compounds -- in the case of Crigler-Najjar syndrome, it's bilrubin. So perhaps an approach similar to that of dialysis might be beneficial...

One thing that comes to mind when I read about how those poor kids miss having a warm blanket over them whilst sleeping, is that the Philips electronics company has come up with textiles that can glow when supplied with electricity (they can even work as graphics display -- one demonstration "gadget" was as the surface cloth on a couch that displayed a digital clock). Using that stuff, they could not only get that crucial blue light from both the blankets and the sheets; such luminescent fabric could also be used as a lining in clothing (with a battery pack) to supply that "bilrubin-killing" blue light during the day...

And one reconsiling element at least, is the fact that a liver transplant does the trick, allthough that brings on it's own set of issues...

That sounds like it could work! I know that I would have trouble sleeping without a blanket on, because I need the pressure or I can't sleep.

hartzofspace said:

Yeah, and I have a problem with sleeping if the lights are on.

By the way, I checked things out, figured that the guy that builds those blue lights for the kids, is already in contact with Phillips (getting a good offering on the blue bulbs he uses). I also found an email addres that apparently "reaches" him, so I dropped him a few words about that luminescent fabric...

Good for you! I hope it helps.

I'm glad that this isn't something like an arm transplant! I also am releived it isn't something like this: http://news.bbc.co.uk/2/hi/americas/6229799.stm

That kind of thing is too weird for my comprehension.

Sometimes things look so experiemental and awkward the way that the medical community tries to end our suffering

I found that both disturbing and upsetting.

That thing about keeping Ashley tiny, seems pretty dang radical to me. For one thing, without being any kind of expert on the subject I have a fat hunch that this can bring on a whole bunch of problems in the long run. Another is that there are means and ways to deal with the transportation of and general care for people unable to move under their own power...

Situation like tese are so sad. But I must admit that I find these illnesses extremly facsinating.

Humm this is one of the side effects of keeping their gene pool small so sad their worldview put themself in a self-imposed box
And ppl ask what is the harm in their world view this is one of them.

That's so true.