There's been a lot of discussion over the years about the proper way to refer to someone with dwarfism. Many people who have the condition prefer the term "little person" or "person of short stature." For some, "dwarf" is acceptable. For most, "midget" definitely is not.
But here's an idea everyone can agree on: Why not simply call a person with dwarfism by his or her name?
Being of short stature is only one of the characteristics that make a little person who he or she is. If you're the parent or loved one of a little person, you know this to be true.
Here are some facts that other people may not realize about dwarfism and those who have it.
More than 300 well-described conditions are known to cause short stature in a child. Most are caused by a spontaneous genetic change (mutation) in the egg or sperm cells prior to conception. Others are caused by genetic changes inherited from one or both parents.
Depending on the type of condition causing the short stature, it is possible for two average-size parents to have a child with short stature, and is also possible for parents who are little people to have an average-size child.
What prompts a gene to mutate is not yet clearly understood. The change is seemingly random and unpreventable, and can happen in any pregnancy. If parents have some form of dwarfism themselves, the odds are likely that their children will also be little people. A genetic counselor can help determine the likelihood of passing on the condition in these cases.
Dwarfism has other causes, including metabolic or hormonal disorders in infancy or childhood. Chromosomal abnormalities, pituitary gland disorders (which influence growth and metabolism), absorptive problems (when the body can't absorb nutrients adequately), and kidney disease can all lead to short stature if a child fails to grow at a normal rate.
Most types of dwarfism are known as skeletal dysplasia, which are conditions of abnormal bone growth. They're divided into two types: short-trunk and short-limb dwarfism. People with short-trunk dwarfism have a shortened trunk with more average-sized limbs, whereas those with short-limb dwarfism have an average-sized trunk but shortened arms and legs.
By far, the most common skeletal dysplasia is achondroplasia, a short-limb dwarfism that happens in about 1 of every 15,000 to 40,000 babies born of all races and ethnicities. It can be caused by a spontaneous mutation in a gene called FGFR3, or a child can inherit a change in this gene from a parent who also has achondroplasia.
People with achondroplasia have a relatively long trunk and shortened upper parts of their arms and legs. They may share other features as well, such as a larger head with a prominent forehead, a flattened bridge of the nose, shortened hands and fingers, and reduced muscle tone. The average adult height for someone with achondroplasia is a little over 4 feet.
Diastrophic dysplasia is a different form of short-limb dwarfism. It happens in about 1 in 100,000 births, and is also sometimes associated with cleft palate, clubfeet, and ears with a cauliflower-like appearance. People who have this diagnosis tend to have shortened forearms and calves (this is known as mesomelic shortening).
Spondyloepiphyseal dysplasias (SED) refers to a group of various short-trunk skeletal conditions. Along with achondroplasia and diastrophic dysplasia, it is one of the more common types of dwarfism. In one type of SED, the lack of growth in the trunk area may not become apparent until the child is school age; other forms are apparent at birth. Kids with this disorder also might have clubfeet, cleft palate, and vision and/or hearing issues.
In general, dwarfism caused by skeletal dysplasias results in what is known as disproportionate short stature — meaning the limbs and the trunk are not of the same proportion as those of typically-statured people.
Metabolic or hormonal disorders typically cause proportionate dwarfism, meaning a person's arms, legs, and trunk are all shortened but remain in proportion to overall body size.
Some types of dwarfism can be identified through prenatal testing if a doctor suspects a particular condition and tests for it.
But most cases are not identified until after the child is born. In those instances, the doctor makes a diagnosis based on the baby's appearance, growth pattern, and X-rays of the bones. Depending on the type of dwarfism the child has, diagnosis often can be made almost immediately after birth.
Once a diagnosis is made, there is no "treatment" for most of the conditions that lead to short stature. Hormonal or metabolic problems may be treated with hormone injections or special diets to increase a child's growth, but skeletal dysplasias cannot be "cured."
People with skeletal dysplasias can, however, get medical care for some of the health complications associated with their short stature.
Some forms of dwarfism also involve issues in other body systems — such as vision or hearing — and require careful monitoring.
Short stature is the one quality all people with dwarfism have in common. After that, each of the many conditions that cause dwarfism has its own set of characteristics and possible complications.
Fortunately, many of these complications are treatable, so that people of short stature can lead healthy, active lives.
For example, a small percentage of babies with achondroplasia may have hydrocephalus (excess fluid around the brain). They may also have a greater risk of developing apnea (a temporary stop in breathing during sleep). This can be due to abnormally small bone anatomy or because of airway obstruction by the adenoids or the tonsils. Occasionally, a part of the brain or spinal cord is compressed. With close monitoring by doctors, however, these potentially serious problems can be detected early and surgically corrected.
As a child with dwarfism grows, other issues also may become apparent, including:
Not every type of dwarfism has all of these problems associated with it, and proper medical care can help with many of them. Surgery also can be used to improve some of the leg, hip, and spine problems people with dwarfism sometimes face.
Nonsurgical options can help, too — for instance, excessive weight can worsen many orthopedic problems, so a dietitian might help develop a healthy plan for shedding extra pounds. And doctors or physical therapists can recommend ways to increase physical activity without putting extra stress on the bones and joints.
Although types of dwarfism, and their severity and complications, vary from person to person, in general a child's life span is not affected by dwarfism. Although the Americans with Disabilities Act protects the rights of people with dwarfism, many members of the short-statured community don't feel that they have a disability.
You can help your child with dwarfism lead the best life possible by building his or her sense of independence and self-esteem right from the start.
Here are some general tips to keep in mind:
Reviewed by: Angela L. Duker, MS, CGC
Date reviewed: October 2014
|Little People of America LPA is a nonprofit organization that provides support and information to people of short stature and their families.|
|March of Dimes The March of Dimes seeks to prevent birth defects, infant mortality, low birthweight, and lack of prenatal care.|
|Genetic Testing Advances in genetic testing have improved doctors' ability to diagnose and treat certain illnesses.|
|A to Z: Spondyloepiphyseal Dysplasia (SED) Learn about genetic disorders and conditions that affect growth and development.|
|Dwarfism Special Needs Factsheet What teachers should know about dwarfism, and how to help students with dwarfism succeed in school.|
|A to Z: Pituitary Dwarfism Pituitary dwarfism is a condition in which the pituitary gland does not make enough growth hormone, resulting in a child's slow growth pattern and unusually small stature.|
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|What Is a Growth Disorder? The other kids in the class have been getting taller and developing into young adults, but your child's growth seems to be lagging behind. Could a growth disorder be the cause?|
|Growth Problems In most cases, teens who are small are just physically maturing a bit more slowly than their friends. Occasionally, though, there's a medical reason why some kids and teens stop growing. Find out about growth problems and how doctors can help.|
|Newborn Screening Tests Newborn screening tests look for harmful or potentially fatal disorders that aren't apparent at birth. Find out which tests are done and which disorders they're designed to detect.|
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|Emily's Story: Little Person, Big Life (Dwarfism) Emily was adopted from Russia, where she was born with a type of dwarfism. In this video, she talks about how she handles the challenge of being smaller than most people.|
|Dwarfism: Emily's Story (Video) Emily was born with a type of dwarfism. In this video, she talks about the challenges of being a little person, and how she overcomes the many hurdles she faces.|
|FAQs: Prenatal Tests Find out what tests are available to keep you informed of your -- and your baby's -- health throughout pregnancy.|
|Dwarfism A dwarf is a short-statured person whose adult height is 4 feet 10 inches or under. Find out what happens when a person has dwarfism and why some people are born with it.|
|Feeling Too Tall or Too Short How do you like your height? Check out this article if you feel too tall or too short.|
|Occupational Therapy Occupational therapy can help improve kids' cognitive, physical, and motor skills and enhance their self-esteem and sense of accomplishment.|
|Physical Therapy Doctors often recommend physical therapy for kids who have been injured or have movement problems from an illness, disease, or disability. Learn more about PT.|
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