Dwarfism occurs in approximately 1 in every 10,000 births. Dwarfism does not discriminate, happening across all cultures and race. There are tens of thousands of individuals with dwarfism living in the US. So when you walk up to the next LP that looks vaguely familiar, think before you ask, “Did you go to Valley High in OH 30 years ago? I had a friend that looked just like you.” Chances are the individual in question is nearly 30 years old and has lived in CA all their lives. Or, “Are you on a reality show? Are you lying? I won’t tell anyone.” Chances are they haven’t been. There are many individuals with dwarfism, especially in well populated cities and states, following geographical and population trends.
(Shared from the little people of America Facebook page)
My surgeries started at age 7 months and have been consistent throughout my life. Every time I would start to think I was done with surgeries I would have more to deal with. So when I’m not dealing with surgeries I make sure and have fun and live life because I know all too well what it’s like to be living life one day and dealing with months/ years of medical problems the next.
I started writing my blog 7 years ago. It was seven years ago that I found a doctor willing to study my dwarfism and I knew I had to start writing.
I was tired of going to google to research my dwarfism and finding nothing. It was then that I realized I had to write my blog, so that there would be something out there for others to find.
I wanted it would give hope to someone else out there to know they weren’t alone. And now years later it has become the starting point of it all.
My parents raised me to believe I could do anything. I ran around the farm with my siblings and would do everything they did. I was raised to be just like all the other kids.
My mom told me that there was one time when I was in the first grade and my mom stopped by the school for something and all the other kids were out at recess and I was in the classroom playing by myself. My teacher (who had all my siblings and who we all respected) told my mom she was worried I would get hurt. My moms response was “I would rather get a call saying Monica got hurt outside playing than a call saying Monica wasn’t with the other kids.”
My parents made it clear from the start that I was to be treated just like all the other children and for that I will forever be grateful. It’s because of that very reason that I grew up knowing I was “different” in the sense that I was short but I was not “different” in any other way.
There are an estimated 30,000 people in the United States and 651,000 internationally with a type of dwarfism.
For Saul Wilson Syndrome there are 9 people in the US and there are 7 people from other countries.
I have only met 2 others with my dwarfism but hope to meet others soon.
Skeletal dysplasia affect bone growth, but generally do not affect cognitive abilities. People with dwarfism are not generally taller than 4’10 at adult height. The typical height of little people ranges from 2’8 to 4’5.
I stand at a height of 3’6. At an early age doctors told my parents to expect cognitive disabilities but that never happened.
“Don’t stare!” doesn’t send a positive message. Teach your children today’s disability etiquette: “Don’t look away; smile and say hello.”
I wish more parents would take the time to talk to their children about people with differences. I hear all the time “Don’t stare at her.” Or see children pointing and laughing. It happens so much in my every day life that sometimes I am oblivious that it’s even happening.
Unfortunately this is something I have grown use to. But there have been times when I’ve been out with my nieces and nephews and it has happened and of course they don’t understand why children do those things. I’ve had my niece tell me “Monica why is that kid staring at you?” and I’ve replied because they weren’t taught any better.
As I’ve grown older it has gotten better some. I have noticed more parents stopping to talk to their child about how “God makes everyone different and she was just born small.” Ive had children stare or say quite loudly “Mom why does she look funny.” To which the mom is usually mortified at the fact that their child just said that and they know I’ve heard.
So please take the time to educate your children that God makes everyone unique in his or her own way. Please educate your children and teach them that it’s ok to be different.
I’ve had many people ask me if I’ve ever thought of having children of my own. I decided at a young age that I would not physically have children of my own. I always said I’d adopt if I decided to have children. When I was a young adult doctors advised against me having children. The risks were to high, not only for me but also for the child.
This is how it works for little people if they have children.
If the person has a dominant Gene, and decides to be with a person who has the SAME type of dwarfism OR be with an average height person, its 50/50
-50% chance of having the same type of dwarfism
-50% chance of being average height
If two people with DIFFERENT types of DOMINANT dwarfism Gene its 25% chance.
-25% of one form of dwarfism
-25% of the other form of dwarfism
-25% of being average height
-25% of having BOTH forms of dwarfism. We call this double dwarf. This will cause a bit more medical issues and possible learning delays.
Saul Wilson Syndrome is a dominant gene.
I don’t have children of my own but I have 13 nieces and nephews who I love just as if they were my own!
Some people often wonder what the correct terminology for a person with dwarfism. Examples of what is acceptable: the persons name, little person, person with dwarfism or LP.
The term midget is offensive to most little people and is often referred to as the “m” word. Any time I hear someone use that word I try to educate them on how it’s offensive and ask that people not use that word and ask that person to educate others whenever they hear someone use it.