Thursday, 20 March 2008

Extraordinary People: The Girls With Too Much Skin

Actually the announcer at the beginning was right- these programmes make you wonder why you ever complain. I was so shocked by the initial image of one of the sisters as a baby. She did look just like an alien, which I feel safe to say, because her dad said it. I've never seen anything like it. I was literally in a state of shock for the first ten minutes of this show, I cried my eyes out. It was so horrific. if you didn't actually see it, I wouldn't know how to explain.
The sisters have a condition (a defective gene again, a meeting of two defective genes) which makes them grow as much skin in a day as a normal person does in two weeks. I had images of the skin kind of hanging off, but actually it just looks really swollen and painful. It affects one person in a million. They have to scrub their skin down twice a day for two hours. It just looks bright red and they just cry. It just looked so unbelievably painful. How can they cope? I just don't understand how people can cope with such awful things. I can't understand how they can have another baby with odds of one in four, and risk it all over again, what amazingly brave people. The girls just seemed so nice and normal. No one deserves that.
The programme also covered another family with the defective 'Harlequin' gene. Again, the picture of the girl as a baby was just utterly shocking. I can't imagine what they must have thought when she was born. I guess now they are older they kind of look like burns victims, but that must be from the constant rubbing of the skin.
Will science eventually cure all these things? I bloody hope so. Anyone who says 'that's the way nature intended things' needs shooting. No one should have to live in pain.


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Ossian said...

But do you agree with Mitchell and Webb that these programs are modern day Barnum & Bailey freak shows? They spoofed it up with their "child with an arse for a face" skit where the announcer says something like "and now another in our sensitive series of documentaries, featuring the child with an arse for a face". It's funny but it's true, isn't it?

lightupvirginmary said...

steve- i like mitchell and webb and they are right- it is a freak show in one sense but you soon realise we are all just people and that. did you see the ad for the one next week? It looks particularly grim.

Ossian said...

no i can't bear to watch them. i watched one about kids who age rapidly and it was enough. how anybody can think there's a god who cares about us is just perplexing. if anything it would have to be a sadistic god, getting kicks out of torturing us. it's clear that we count for nothing except to each other, which is why i call myself a humanist. there is nothing else in the universe that cares about us. there may be something else, some other creatures, powers, whatever, but the all our world could ever mean to them is a zoo.

lightupvirginmary said...

a god that cares about us... that's definitely untrue. But why would people worship the other kind of god either, who lets us destroy each other? Neither god is worth our time really.
God does nothing for no one!

Anonymous said...

God does care about us. He saved my life. God has given me a lot of struggles. I've been homeless, lost my oldest brother to suicide at 25 years old, and watched my family get ripped apart by drugs. God gives us struggles so that people can see his miracles. God also gives us struggles to make us unbelievable, strong people who can testify to his love.