Wednesday, August 18, 2010

The Beautiful People, The Beautiful People

With all our worries about the recent EDS diagnosies I would be remiss if I didn't point out the advantages of having the disorder.

You can, for example, entertain your friends with freaky body manipulations - always a hit at parties.

With EDS, yoga is a breeze.

The disorder makes washing one's own back effortless.

And then there is the more superficial advantage: EDS has been called, accurately or not, "The Beautiful People's Disease." It seems that actors and models have it (or the associated, but somewhat more benign, Joint Hypermobility Syndrome) in a greater proportion than does the general population. The disorder tends to make those who are afflicted slender, longer-limbed, with delicate, long fingers, and with skin that is often quite soft and flawless. In runway models, the loose joints allow for that classic cat-like walk with hips that swing easily from side to side.

A quick google brings up articles speculating that Micheal Jackson had it. Johnny Depp is said to have been diagnosed as well. Mary Louise Parker, David Caruso, Gwenyth Paltrow, and Katie Holmes have been discussed. Two of the tween sensation Jonas Brothers are mentioned. British model Erin O'Connor is one of many, many models that are frequently part of the conversation (the young model Marissa Irwin lives with the rare and painful Arnold-Chiari malformation - a direct result of her Ehlers-Danlos syndrome.)

Certain athletes, particularly swimmers, benefit as well from the anatomical oddities conferred by EDS. The great Australian swimmers Ian Thorpe and Jodie Henry have it and gold medalist Micheal Phelps is rumored to have it as well.

My wife and I had discussed the Girl's unusual attractiveness before all this. We've joked nervously about the strangely womanly way she tends to pose or stand - hand on hip with palm turned out, leg extended, and opposite hip pushed out. It looks very modelesque and isn't a typical pose for a preschooler. It now makes sense and seems quite natural for someone with joints as loose as hers - it offers more stability and comfort. Her skin has always been smooth as velvet with a flawless purity that more than a few people have coveted. It isn't hard imagining her becoming one of the "Beautiful People." So perhaps all the pain, misery, and discomfort she'll face will be worth it in the end...

But I doubt it.


Kristen said...

Hi my name is Kristen. I never do this but I was randomly looking at blogs cuz I couldn't sleep and when I saw the little boy with his leg strat up in the air I stopped to read your blog, not because Im curious but because I have Ehlers Danlos too. I have two brothers and only one and me have it. Matt can pull the skin off his forehead, gross. I was not diagnosewd until I was pregnant and my hips/arms/knees /jaws kept coming out or subluxing. anyway. Ive never met anyone with EDS but my son has hypochondroplasia(form of dwarfism) and my 1st cousin has OI (brittle bone disease).

Sorce rer said...

I see that this post was over 3 years ago, but I can't resist chiming in.
My pain has grown worse and even though I am aging on paper, I am definitely still eerily young looking and my former self as a model wouldn't be too far fetched to resume.
But i dance, then I need to rest for days, I do something strenuous and need to relax on the sofa for weeks.
I'm surprised someone has not written a story or made a movie about Ehlers Danlos type classic or hypermobility.
Forever young and pretty outside while in exhausting pain on the inside.
It would make for a great tragic romantic story.

Kirstie Hyder said...

Oh that is so lovely but unfortunately so true,my daughter has this week been diagnosed with eds-hm and like both of these blogs has the most amazingly clear perfect youthful skin a true beauty yes,but again like the two before suffers in constant pain and even the most simple of tasks takes days/weeks to recover from. My heart goes out to all the beautiful people living a life of pain x

Anonymous said...

I just thought to myself...if I had the choice to be disfigured or live in this horrific nightmare of pain and suffering called eds, of course I think I'd opt for not having eds...than I really think about it.
I am 53 & when I can leave the house, I'm treated quite well, even in our miserable medical community...most of the time.
It is so hard to even put yourself out there and tell drs, friends,family about eds, ppl ALWAYS comment "but you look fine" truly is a nightmarish existence.