They Might Be Giants — OH! They ARE!

I made the diagnosis from a single photo. Sultan Kosen has been much photographed of
late, since he agreed to be measured three times in one day and thus clinched the title of
tallest man in the world according to the Guinness Book of World Records. That is two
meters 46.5 centimeters, or eight feet one inch for us metrically challenged Americans.
He has apparently set records for the biggest hands and biggest feet.

The giant most of us Americans have known about recently has been Andre the Giant,
who made it to seven foot four. This professional wrestler of French origin died in 1993
at the age of 46. I diagnosed him from a single photo, too. I remember figuring out early
on that this was a likely diagnosis for the gentleman who played Lurch, the butler on the
vintage television show “The Addams Family.”

The disease is called “acromegaly.” Although it can show up in a variety of forms, in

general these are taller than average folks. The giveaway in the facial structure is what
you call a “lantern jaw.” There are lots of photos and descriptions of people with this
anomaly, which seems always to have provoked fascination.

The hyper secretion of growth hormone generally comes from a (benign) tumor
associated with the pituitary gland that secretes excessive growth hormone. Between the
French and American parts of my career, I have been involved with the removal of such
tumors in about 20 patients. Occasionally, especially in the earlier days, it involved a
large opening of the skull to get to the tumor. More recently, going in to get the tumor
out through the nose has been far less traumatic. The primary caregiver is generally the
endocrinologist. The Guinness Book Record Holder seems often to be photographed
walking with crutches. Bigger, alas, does not always mean better. The potential
complications can affect pretty much every organ in the body. The social implications
are significant, too. It is a rare illness, only affecting three or four people in a million.
For both medical and psycho-social aspects, there is no better place to start than this
page.

Just when I started to wonder about what quality of medicine Sultan Kosen had in his
childhood, I learned that he had one of these tumors, and that it was removed in 2008.

Given how rare this disease is, our fascination with it is impressive. In photos, children
crowd around Mr. Kosen in London. Although I do not know if he suffers from the
weakness and fatigue that sometimes occur in acromegalic folks, I do know that he will
have no trouble at all finding employment. He will likely turn up where many of the
physically unusual turn up–show business. The Times of London says that “Ugly,” a
character modeling agency, can offer him a salary of one to ten thousand British pounds
daily. He is quoted as saying all that he seeks is a large car, and love.

Humans have historically been fascinated by structural abnormalities in our own species,
with so called “giants” occupying a special place, both in fantasy and in desire for
viewing. I have seen ancient medical textbooks, even remnants of 19th century specimen
collections presented as “museums,” even a famous older movie called “Freaks” about
the lives of the physically abnormal, or challenged.

Even in fantasy, it is hard to come up with a good fairy tale without a giant, with Jack and
the Beanstalk being the prototype.

We have got two different factors here, at least. Virtually anything, from a website to a
cuddly animal (alive or stuffed) to an amusement park attraction seems to be advertised
as “giant.” We really do believe, in many spheres, that bigger is better. I think that we
seem to feel dwarfed by that which is extraordinarily large. We somehow have an
increased confidence in that which is big; it is all-inclusive somehow, so we are “safe.”
We are “protected.” We are more scared of a scary thing because it is “big” and it is
harder to defend ourselves. We may be talking “Godzilla” in the movie of the same name
or in the movie “Ghostbusters,” an oversized Stay-Puff Marshmallow Man. We are more
protected from accidents; it seems, by a large car than a small one.

This is the easy part.

Our interest and fascination with the structurally anomalous humans, the “freaks,” has
been with us for a long time and is deeply routed. I am not sure a modern modeling
career with “Ugly” agency is all that different from a 19th century “medical museum” or
early 20th century carnival side show.

In the middle ages, when theological beliefs were dominant, anyone who was different or
viewed as malformed could be designated as a concrete expression of the wrath of a
Supreme Being. We have at least moved beyond that set of beliefs, I think. I remember
hearing that the late Michael Jackson purchased the antique skeleton of the “Elephant
Man,” a victim of the disease neurofibromatosis, who had been the subject of biographies
in the theater and movies. For this disease, also, we have a website of both medical
information and psychosocial support.

I am glad we have evolved enough to offer serious information and psychosocial support,
as well as really real hope, to patients afflicted with these rare diseases. The fascination
still exists, no matter how politically incorrect we think it to be.

According to this site, over a hundred years ago, Barnum and Bailey Circus performers
met in London and decided to change their name from “freaks” to “prodigies.” I
certainly applaud Ms. Annie Jones, bearded lady, and her group for coming up with this.

We look at a site like this the same way we look at an automobile accident when we drive
by on the expressway. We somehow validate our own lives, as we can say, “there but for
the grace of God go I.” We feel validated in our existence as we can tell our families,
“Thank God I got home safely.” Whatever frustrations we have with own existences,
now matter how banal they may seem, seem smaller. We are reminded that our very
existence is a gift. We are thankful for the simple realities of our existences, profoundly
and thoroughly thankful, every time we see someone who is missing or has somehow
distorted the most elemental aspects of human structure that we take for granted in
ourselves.

We can look at people through medical models and psychosocial models and all kind of
models. I like the one, once described to me in detail by a lobbyist to the provincial
parliament in Alberta, Canada. We are all “differentially abled,” from cradle to grave,
and simply have to make the best of life whatever part of the process we happen to be in.
Whether we are a child giving pleasure to a mother by accepting food, or an older person
requiring care. I went one step further, when I conversed with this person. We are all
geniuses, whether we are good at things academic or have a genius for connecting
emotionally. A bit idealistic perhaps, but it still drives me to believe that it really is
possible to find the brilliance in any person. It does take a pretty wide scope and a lot of
understanding. But it is, frankly, a lot more interesting than the tendency of all things
large and quantitative to move toward “norming,” toward looking for similarities and
classifications of large groups of individuals.

I wish Sultan Kosen well, and really do hope that he finds the love he seeks.