FAQs

Frequently Asked Questions


Q: What is the correct term for a person of short stature?

 

A: Although the term dwarf is often used, many people take offence to it. “Little Person” or “Person of Short Stature” are generally considered to be more acceptable.  “Midget” is highly offensive and considered a derogatory and oppressive term.
As with most people, Little People prefer to be called by their names rather than a label.

 

Q: What is the definition of dwarfism?

 

A: Little People of Ontario (LPO) defines dwarfism as a medical or genetic condition resulting in an adult height of 4'10"/147cm or under, among both men and women, although in some cases a person with a dwarfing condition may be slightly taller than that.  In other words, dwarfism is as a result of a medical condition.

The average height of an adult with dwarfism is 4’0, but heights range from 2’8 to 4’10.

 

Q: What are the most common types of dwarfism?

 

A: The most frequently diagnosed cause of short stature is achondroplasia, a genetic condition that results in disproportionately short arms and legs.  It occurs in approximately every 1 out of 20,000 births and constitutes about 70% of all cases of dwarfism. Of the remaining 30%, some of the most common forms of disproportionate dwarfism include spondyloepiphyseal dysplasia congenita (SEDc), diastrophic dysplasia, pseudoachondroplasia, hypochondroplasia, and osteogenesis imperfecta (OI). In all there are thought to be over 250 distinct conditions leading to short stature.

Proportionate dwarfism --  short-stature conditions that result in the arms, legs, trunk, and head being in the same proportion (relative size to one another) as in an average-size person -- It can be as a result of a hormonal deficiency, and may be treated medically, resulting in an average or near average height. There are some forms of proportionate dwarfism that are as a result of a skeletal dysplasia but as with people with disproportionate short stature treatment for a hormone deficiency is not available. 

Q: What about the "M" word (i.e. Midget)

A: The "M" word is a demeaning slur for a person who has dwarfism. Dwarfism is the result of a medical condition. The "M" word originates from the oppression and exploitation of people with dwarfism in "freak shows" of the mid 1800s. There are many who don't know our history and that's a shame. While often people's usage, comments and intent may be honest and heart felt, they do not respect the prejudice a person with dwarfism faces nor the lack of acceptance, respect or understanding. In order to gain respect and acceptance, one hurdle an oppressed group must attain is the right of self identification. If necessary, we use "person with dwarfism," or "Little Person" (LP) or "person of short stature" but most people would rather be referred to by their name than by a label. Like those who have justifiably obtained control of the "N" word or other groups who where previously identified with derogatory slurs, it means we as a community of people with dwarfism need to obtain control of the "M" word. Just as many others before us, it is now our turn for awareness, acceptance and respect.

 

Q: What is the medical prognosis of a person with short stature?

 

A: It varies from condition to condition, and with the severity of that condition in each individual. However, the majority of LPs enjoy normal intelligence, normal life spans, and reasonably good health. Many will require surgeries or other medical interventions to address complications and maximize mobility.

Orthopedic complications are not unusual in people with disproportionate dwarfism such as achondroplasia and diastrophic dysplasia, and sometimes surgery is required. A common problem, especially in adults, is spinal stenosis -- a condition in which the opening in the spinal column is too small to accommodate the spinal cord. People with this condition suffer from numbness and/or pain. It can be treated with a type of surgery called a laminectomy.

 

Q: Are people with dwarfism able to participate in athletic activities?

 

A: Yes, within the limits of their individual medical diagnoses. For instance, swimming and bicycling are often recommended for people with skeletal dysplasias, since those activities put minimal pressure on the spine. Long-distance running and contact sports can be harmful due to the potential of significant pressure or impact on the spine.

 

Q: I've heard that car airbags can be dangerous to people of short stature. Should I have the airbag in my car disconnected?

 

A: You certainly may want to consider taking such a step. You can find out more at the National Highway Transportation Safety Administration's airbag-information site.

 

Q: Can average-size people become the parents of children with dwarfism?

 

A: Yes, more than 80% of children with dwarfism have average-height parents and siblings. 

 

Q:  Can short-statured couples become parents? Of children with dwarfism? Of average-size children?

 

A: Yes. The odds vary with diagnosis, but a person with achondroplasia has one dwarfism gene and one "average-size" gene. If both parents have achondroplasia, there is a 25 percent chance their child will inherit the non-dwarfism gene from each parent and thus be average-size. There's a 50 percent chance the child will inherit one dwarfism gene and one non-dwarfism gene and thus have achondroplasia, just like her or his parents. And there is a 25 percent chance the child will inherit both dwarfism genes, a condition known a double-dominant syndrome, and which invariably ends in death at birth or shortly thereafter.
  

 

Q: We are parents of a newborn child who has been diagnosed with achondroplasia, and our pediatrician doesn't know anything about it. What should we do?

 

A: Make sure the pediatrician gets a copy of the "Health Supervision for Children with Achondroplasia," an article by the Committee on Genetics of the American Academy of Pediatrics, which was originally published in 1995 and was updated in 2005. It is an excellent overview to the issues involved in treating a child with achondroplasia.

 

 

Q: We have heard that very young achondroplastic children can run into a variety of complications. What should we be looking for?

 

A: There are three complications that sometimes require intervention in achondroplastic infants and toddlers. In all likelihood your child will not run into any of these problems, but she or he should be evaluated for them nevertheless.

 

Compression of the brain stem resulting from the base of the skull (foramen magnum) being too small to accommodate the spinal cord. Symptoms include central apnea (a condition that causes a person to stop breathing frequently while sleeping) and a general failure to thrive. This condition is treated through surgery, and children who have undergone this operation tend to do very well.

 

Hydrocephalus, the technical term for excess fluid on the brain, resulting from the drainage openings in the skull being of insufficient size. Many people with achondroplasia have some hydrocephalus, and no harm generally results. In addition, all people with achondroplasia have slightly enlarged heads, which can sometimes create the appearance of a problem when there is none. Nevertheless, occasionally hydrocephalus can present a problem, in which case a shunt may be surgically implanted to drain the excess fluid.

 

Obstructive sleep apnea (OSA) results from an infant's or very young child's airways being too small or improperly shaped. The child stops breathing and wakes up frequently during the night (unfortunately, as is generally the case with apnea, these moments of wakefulness are fleeting and often go undetected by parents), sweats, snores, and fails to thrive. Depending on the severity, a physician may recommend waiting until the child outgrows the problem, monitoring the child's oxygen levels and/or trying treatments such as supplemental oxygen and/or CPAP (or BiPAP), a treatment device that provides pressure to the lungs. In very rare instances, a tracheostomy (an opening in the throat) may be needed to circumvent the tiny upper airways until those airways have a chance to grow. Children who continue to have or are diagnosed with OSA after the age of 3 may be treated by removing the tonsils and adenoids (further opening up the air passages).

 

All children with achondroplasia should have screening tests for these complications in the first year of life: head (including the base of the skull) imaging (CT or MRI) and a sleep study.

 

 

Q: My dwarf child will soon undergo surgery. What special considerations regarding anesthesia should be taken into account?

 

A: In general, the anesthesiologist needs to be careful not to hyperextend your child's neck as much as she or he might with a non-dwarf child. Dosage should be based upon your child's weight, rather than age.

Please be sure your child's doctors have seen the article "Dwarfs: Pathophysiology and Anesthetic Implications," by Berkowitz, Raja, Bender, and Kopits, in the October 1990 issue of the medical journal Anesthesiology(Volume 73, Number 4, pages 739-759). (Note: The full text of this article is available in the LPA Online Library and the LPA Medical Resource Center). Special Problems Of Anesthesia For Little People” by Dr. Judith G. Hall, Prof. - Medical Genetics, University of British Columbia is another very informative article on this topic.  

 

 

Q: We've heard about an operation to lengthen an achondroplastic dwarf's legs and arms that can make them a similar height as their peers. Should we consider this?

 

A: As a general statement of philosophy, most members of the Little People community believe that no child should undergo surgery unless it is for a treatable medical condition that will improve her or his health. Limb-lengthening surgery, by contrast, does not address any medical condition, although certainly there are dwarfs who have undergone the procedure and are quite happy with the results.

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