Think You Have Problems?
Consider Primordial Dwarfism

By Ted Twietmeyer
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.
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.
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.
Hanna at age 11 in 2005
Imagine being the little girl shown above named Hanna almost 12 years old. She weighs just 16 POUNDS and is just 2'  3" tall.
How short is that? Think about 2 1/2 sheets of notebook paper placed end to end. That's how tall she is.
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.
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.
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?
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?
 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...
 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.
Ted Twietmeyer



This Site Served by TheHostPros