FAQs

A: Although the term dwarf is often used and dwarfism is a medical term, some people are not as comfortable with that term. “Little Person” or “Person of Short Stature” are generally considered to be more acceptable. The M-word is highly offensive and considered a derogatory and oppressive term. It is a term generally associated with trauma for someone of short stature. As with most people, Little People prefer to be called by their names rather than a label.

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 certain types of dwarfism may be slightly taller than 4'10". In other words, dwarfism is a skeletal dysplasia as a result of a medical condition. The average height of an adult with dwarfism is 4’0", and heights typically range from 2’8" to 4’10".

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 over 400 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 as in an average-size person — can be 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 a result of a skeletal dysplasia but as with people with disproportionate short stature, treatment for a hormone deficiency is not available.

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. While people’s usage, comments, and intent may sometimes be honest, the term does not respect the prejudice a person with dwarfism faces nor the lack of acceptance, respect, or understanding. Self-identification is essential; if necessary we use “person with dwarfism,” “Little Person (LP),” or “person of short stature,” but most people would rather be referred to by their name. Like other groups reclaiming dignity from slurs, the dwarfism community seeks awareness, acceptance, and respect.

A: It varies from condition to condition and by severity. 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 disproportionate dwarfism (e.g., achondroplasia, diastrophic dysplasia) and sometimes surgery is required. A common problem, especially in adults, is spinal stenosis—when the opening in the spinal column is too small to accommodate the spinal cord—leading to numbness and/or pain. It can be treated with a laminectomy.

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

A: You may want to consider it. You can find out more at the National Highway Transportation Safety Administration’s airbag-information site.

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

A: Yes. The odds vary by diagnosis. For achondroplasia (one dwarfism gene and one average-size gene):

• 25% chance the child inherits two non-dwarfism genes → average-size.
• 50% chance the child inherits one dwarfism gene and one non-dwarfism gene → achondroplasia.
• 25% chance the child inherits two dwarfism genes (double-dominant) → typically fatal at or shortly after birth.

A: Ensure the pediatrician reviews “Health Supervision for Children with Achondroplasia” by the American Academy of Pediatrics (Committee on Genetics). It’s an excellent overview for treating a child with achondroplasia.

A: Three complications sometimes require intervention in infants and toddlers (your child may never experience these, but evaluation is recommended):

• Brainstem compression due to a small foramen magnum: symptoms include central apnea and failure to thrive. Treated surgically; outcomes are generally good.
• Hydrocephalus (excess fluid on the brain): many have some degree without harm; occasionally a shunt is needed.
• Obstructive sleep apnea (OSA): small or improperly shaped airways cause frequent nighttime awakenings, sweating, snoring, and failure to thrive. Options include monitoring, supplemental oxygen, CPAP/BiPAP, rarely tracheostomy; tonsil/adenoid removal may help after age 3.

All children with achondroplasia should have screening in the first year: head imaging (CT or MRI, including skull base) and a sleep study.

A: Avoid hyperextension of the neck; dose by weight, not age. Helpful readings include “Dwarfs: Pathophysiology and Anesthetic Implications” (Anesthesiology, Oct 1990) and “Special Problems Of Anesthesia For Little People” by Dr. Judith G. Hall.