If you know someone at school who is very short for their age or maybe looks a little different than the other kids in class, this might be because they have a condition called dwarfism.  This condition is actually pretty rare – it only affects 1 in 15,000-40,000 babies in the United States – but it can have a huge impact on kids and their families. Read on to find out more.

Dwarfism Defined

Dwarfism is a condition which results in a grown-up being much shorter than average for their age: generally, speaking, someone with this condition is under 4 foot 5 inches in height.  This short stature is caused by another medical condition.  According to the Little People of America, one of the largest advocacy groups for people with dwarfism, the preferred term for people with this condition is “little person”, “person of short of stature” or “dwarf”. The term “midget” is considered to be offensive.

Types of Dwarfism

There are two main types of dwarfism, proportionate and disproportionate.

  • Proportionate dwarfism: this means that all of the person’s body parts – such as their arms and legs, torso (chest) and head are in proportion to one another, but just smaller than the average person.
  • Disproportionate dwarfism: this means that some body parts are smaller than average, while some part are of average size.

How Do You Know if a Person has Dwarfism?

Proportionate and disproportionate dwarfism have different signs and symptoms.

Proportionate dwarfism

Proportionate dwarfism is a less common form of this condition.

  • The most common cause of this condition is a problem with levels of growth hormones from the pituitary gland.
  • The most common signs include a height that is below the 1/3 percentile for a person’s age, a growth rate that is slower than average and delayed or no sexual development in puberty (for example, a girl with dwarfism may or may not develop breasts and start her period when she becomes a teenager).

Disproportionate dwarfism

This is the most common form of dwarfism and many of the cases are caused by either achondroplasia or spondyloepiphyseal dysplasia.

  • 70% of these cases are caused by a condition called achondroplasia (see below for more details), which results in a trunk (chest) of average size, with short arms, legs and fingers. People with this condition cannot move their arms at the elbow as freely as a regular person. The head can look too big for the body. They can also have bowed legs, a hunched upper back. The average height for someone with this condition is around 4 feet.
  • If dwarfism is caused by spondyloepiphyseal dysplasia, the person will have a shorter trunk, neck, arms and legs but average-sized hands and feet. Many will also have a broad chest, unusual facial features like flattened cheekbones or a cleft palate, hips bone and spines that are deformed, joint pain and stiffness and problems with hearing and seeing.

What Causes Dwarfism?

This is not an easy question! It is estimated that there are between 200-300 different conditions that can result in dwarfism!  Many of them are due to genetic mutations in the sperm or the egg before a baby is even conceived.  In other words, the vast majority of people with dwarfism are born to parents of average height.

Some of these causes include:

  • Achondroplasia, which results from a mutated gene and is responsible for nearly ¾’s of all cases of dwarfism.
  • Turner syndrome, which only affects girls and is caused by part or all of one of the “x” chromosomes being absent.
  • Not enough growth hormones from the pituitary gland.
  • Spondyloepiphyseal dysplasia
  • Poor nutrition, which can delay normal growth and development

Complications from Dwarfism?

Proportionate and disproportionate dwarfism both have their own sets of complications, or problems that they can cause for the person with this condition.

Proportionate dwarfism complications include:

  • Poor growth and development
  • Poorly developed organs
  • Heart problems

Disproportionate dwarfism complications include:

  • Frequent ear infections and potential for hearing loss
  • Delays in development of motor skills (like writing or drawing)
  • Sleep apnea, a condition where someone actually stops breathing in their sleep
  • Arthritis, which can cause pain, swelling or stiffness in the joints
  • Spinal problems and deformities
  • Hydrocephalus, or a buildup of fluids in the brain which can cause pain and pressure

Another problem that people with this condition have is that they are often teased at school. As they grow up, they can have problems with achievement at school or difficulty finding a job since many people believe that dwarves also have low intelligence (which is not true). However, anxiety, poor social skills, low self-esteem and depression are extra challenges that people of short stature face.

How Does a Doctor Diagnose Dwarfism?

A doctor will diagnose dwarfism based on measurements of a child’s height and weight for their age and their appearance.  Modern medical technology also allows the following kind of tests:

  • Imaging tests like X-rays to look for deformities in the spine, hips or other bones
  • Hormone testing to look for low levels of pituitary hormones
  • Genetic testing to look for gene mutations

How is Dwarfism Treated?

It is important to understand that there is no “cure” for dwarfism. It is not considered to be a disease like cancer or diabetes.  However, there are some treatments available to help treat some of the signs of this condition or to avoid complications.  These can include:

  • Surgery to treat deformities of the spine or other bones or to lengthen the bones
  • Hormonal therapy if the dwarfism is caused by a hormone imbalance
  • Regular and ongoing medical check-ups and care

Supporting Dwarfism at Home

There are many things that parents can do to help their child if they have dwarfism:

  • Use of car seats for care safety
  • Use of high chairs or booster seats for safe eating
  • Use of pillows and supports as needed

In short, though dwarfism is a rare condition, it is a complicated disease and can have a huge impact on both patients and their families.