- So we think we have problems as adults?
A recent special aired on TLC, which is so important I wanted
to share it with you. Most of this essay is based on the facts presented
by children, parents and doctors. However, I've also included a few comments
that were not discussed on the special.
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- Perhaps to realize our own potential
and what we have, we must look at what's it like to be short - REALLY
short. We're not talking about dwarfs such as those that played in the
Wizard of Oz. Not even the pigmies of Africa. These are special people,
of which there are only about 400 of them in the entire world. About 40
of them live in the United States. These children are eventually
diagnosed by doctors with "primordial dwarfism." They are
considered to be THE smallest people in the world.
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- Many parents follow the standard treatment
protocol for growth problems as prescribed by doctors, which include painful hormone
injections. Quite often primordial dwarfism isn't diagnosed by their doctor
until the child is about 5 years old, when the threshold for primordial
dwarfism is reached. The medical profession is baffled as to the cause
- it is not the result of a pituitary gland problem, as hormones
are at normal levels.
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- Hanna at age 11 in 2005
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- Imagine being the little girl shown
above named Hanna almost 12 years old. She weighs just 16 POUNDS
and is just 2' 3" tall.
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- How short is that? Think about 2 1/2
sheets of notebook paper placed end to end. That's how tall she is.
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- Hanna must deal with knowing how short
she is every single day. These tiny people don't usually live beyond 30.
One has reached the unusual age of 43. These teenagers and adults have
the same wants and desires that you and I have. They are
well aware of their fate in life which mentally affects them in many different
ways. Among the problems they must deal with everyday include a voice problem
- their voices have the pitch and lack of clarity of a one year old
child. It's just the result of un-developed vocal cords and a very tiny
voice box.
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- Hanna has a 20 month old cousin that
towers over her at almost twice her height when he comes to visit. His
head is about twice the size of hers, and she helps him walk up the steps
to the porch. After all, at 20 months he's still a toddler.
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- Everything in our world is placed at
the height off the floor for ordinary people - doorknobs, sinks, counters
etc... A table is usually 30" off the floor, and a kitchen countertop
36." Imagine not even being able to see the kitchen sink, stove top
or counter top at all. These people are so short that unlike regular little
people about 3-4ft. tall, they will never drive a car even with the longest
pedal adapters. This results from their very short size and strength
problems. Little people have arms and legs which can have almost normal
adult strength, but primordial dwarfism affected people do not. They have
very tiny arms and legs, and parents buy their shoes and clothes in
the toddler section of stores. How could it feel, to be an adult and shop
for clothes to fit you there?
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- Perhaps the most difficult thing of all,
is that (according to doctors) any pregnancy carried to term by a female
with this disease will most likely be fatal. Imagine one of these adults
attempting to adopt a child. Think they would have any chance at all getting
that approved by ANY social service agency?
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- All of this is something to think
about, when we're standing at the pump tomorrow watching the numbers blur
by and think that's the end of the world for us...
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- There is so much more to this story
than I could ever write here. More biographical information others with
this disease is available here . Because
so few people have this terrible disease, there will never be any real
funding for research into curing it. No pharmaceutical company will have
any interest in helping these children and adults.
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- Ted Twietmeyer
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- www.data4science.net
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