What is the definition of dwarfism?
What are the most common types of dwarfism?
What is a midget?
What is the medical prognosis of a person with short stature?
Is dwarfism considered a disability?
Are people with dwarfism able to participate in athletic activities?
I've heard that car airbags can be dangerous to people of short stature. Should I have the airbag in my car disconnected?
Can average-size people become the parents of children with dwarfism?
Can short-statured couples become parents? Of children with dwarfism? Of average-size children?
Has the gene for achondroplasia been discovered?
What is LPA's position on the implications of these discoveries in genetics?
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?
We haveheard that very young achondroplastic children can run into a variety of complications. What should we be looking for?
My dwarf child will soon undergo surgery. What special considerations regarding anesthesia should be taken into account?
Does Little People of America have any special resources for parents?
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?
Is it possible to adopt children with dwarfism?
Q: What is the definition of dwarfism?
A: Little People of America (LPA) defines dwarfism as a medical or genetic condition that usually results in an adult height of 4'10" or shorter, among both men and women, although in some cases a person with a dwarfing condition may be slightly taller than that.The average height of an adult with dwarfism is 4’0, but typical heights range from 2’8 to 4’8.
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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. The average height of adults with achondroplasia is 4'0". Other relatively common genetic conditions that result in disproportionate short stature include spondyloepiphyseal dysplasia congenita (SEDc), diastrophic dysplasia, pseudoachondroplasia, hypochondroplasia, and osteogenesis imperfecta (OI). As one might expect from their names, pseudoachondroplasia and hypochondroplasia are conditions that have been confused with achondroplasia; diastrophic dysplasia occasionally is, too. OI is characterized by fragile bones that fracture easily.
According to information compiled by the Greenberg Center at Johns Hopkins Medical Center and by the late Lee Kitchens, a past president of LPA, the frequency of occurrence of the most common types of dwarfism is as follows:
1. Achondroplasia (one per 26,000 to 40,000 births)
2. SEDc (one per 95,000 births
3. Diastrophic dysplasia (one per 110,000 births)
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 -- is often the result of a hormonal deficiency, and may be treated medically, resulting in an average or near average height. There are not such treatments available for people with disproportionate short stature.
Although achondroplasia accounts for perhaps 70 percent of all cases of dwarfism, there are approximately 400 diagnosed types, and there are some individuals with dwarfism who never receive a definitive diagnosis and/or have a condition that is unique to themselves or their family.
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Q: What is a midget?
A: In some circles, a midget is the term used for a proportionate dwarf. However, the term has fallen into disfavor and is considered offensive by most people of short stature. The term dates back to 1865, the height of the "freak show" era, and was generally applied only to short-statured persons who were displayed for public amusem*nt, which is why it is considered so unacceptable today.
Such terms as dwarf, little person, LP, and person of short stature are all acceptable, but most people would rather be referred to by their name than by a label.
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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.
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Q: Is dwarfism considered a disability?
A:Opinions vary within the dwarf community about whether or not this term applies to us. However, LPA embraces the idea that dwarfism is considered a disability and members should identify as such. Members should feel confident to identify themselves as disabled. Dwarfism is a recognized condition under the Americans with Disabilities Act. See our statementHERE
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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.
The Dwarf Athletic Association of America (DAAA) organizes competitions at the annual convention of the Little People of America.
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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.
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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. LPA is deeply concerned that as it becomes increasingly common to diagnose genetic conditions in utero, including dwarfism, prospective parents will find it difficult to obtain the data they need to make an informed decision as to whether to continue with the pregnancy. Genetic testing carries with it frightening implications for a whole range of issues, including a person's right to obtain medical and other forms of insurance. LPA believes strongly that prospective parents who become familiar with the full, productive lives led by little people will not likely choose termination.
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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.
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Q:Has the gene for achondroplasia been discovered?
A: The gene for achondroplasia was located and identified for the first time in 1994 by a team of scientists at the University of California in Irvine. The lead scientist, the late Dr. John Wasmuth, urged that in-utero screening for achondroplasia be prohibited except to detect double-dominant syndrome among achondroplastic couples.
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Q:What is LPA's position on the implications of these discoveries in genetics?
A: The following is LPA's "Position Statement on Genetic Discoveries in Dwarfism":
The short statured community and society in general have become increasingly aware of eugenics movements (efforts to improve human qualities by selection of certain traits) in medical history in the U.S. and abroad and the traditional desire of parents to create perfect, healthy children. Along with other persons affected by genetic disorders, we are not only concerned as to how our health needs will be met under dramatically changing health care systems, but how the use of genetic technologies will affect our quality of life, medically, as well as socially. What will be the impact of the identification of the genes causing dwarfism, not only on our personal lives and our needs, but on how society views us as individuals?
The gene for achondroplasia, the most common type of dwarfism, was discovered in 1994. Achondroplasia is caused by a gene mutation that is the same in 98% of the cases. The mutation, affecting growth, especially in the long bones, occurs early in fetal development in one out of every twenty thousand births. Since the achondroplasia gene discovery, genes for many other forms of dwarfism have been located and identified, including those for spondyloepiphyseal dysplasia, diastrophic dwarfism and pseudoachondroplasia. These discoveries occurred much more rapidly than either the members of Little People of America (LPA) or the medical community had anticipated. Suddenly and unexpectedly, LPA was placed right in the middle of the medical, social and ethical debate surrounding the brave new world of genetic technology. At that time, formal discussions and education on genetic issues had not yet begun within LPA. Most of us, like most of society, had limited knowledge about the Human Genome Project and the social and ethical implications associated with the possible applications of genetic technology. On one hand, the breakthrough may be used to help achondroplastic couples to identify a fetus with "double dominant" or hom*ozygous achondroplasia, a fatal condition that occurs in 25% of births to those couples. It is also possible that the tests for genes causing short stature will become part of the increasingly routine and controversial genetic screening given to all expectant mothers.
LPA's discussion of these possibilities brought forth a strong emotional reaction. Some members were excited about the developments that led to the understanding of the cause of their conditions, along with the possibility of not having to endure a pregnancy resulting in the infant's death. Others reacted with fear that the knowledge from genetic tests such as these will be used to terminate affected pregnancies and therefore take the opportunity for life away from children such as ourselves and our children. The common thread throughout the discussions was that we as short statured individuals are productive members of society who must inform the world that, though we face challenges, most of them are environmental (as with people with other disabilities), and we value the opportunity to contribute a unique perspective to the diversity of our society.
LPA is revitalizing its public education campaign, so that people of all sizes, including potential parents and health care professionals, will be properly informed of the realities of life with short stature. LPA is made up of over five thousand individuals with more than a hundred types of dwarfism, their families, a medical advisory board, and other friends and professionals. We are teachers, artists, lawyers, doctors, accountants, welders, plumbers, engineers and actors. We represent every nationality, ethnic group, religion and sexual orientation. Many of us have secondary disabilities as well. We are single and married, with families with spouses, parents and children who are average size and dwarfed, biological, and adopted. For LPA members there is a common feeling of self-acceptance, pride, community and culture. Since 1957, LPA has provided peer support, social and educational opportunities to thousands of individuals with dwarfism and their families. We have been educating society and the medical community about the truths of life with short stature and working to dispel commonly held myths. With the discovery of various genes and mutations causing dwarfism, our educational and advocacy efforts have become ever more important, in the face of a rapidly changing genetic frontier.
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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.
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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 are 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: imaging (CT or MRI) of the head, including the the base of the skull,and a sleep study.
These problems, as well as others, are discussed in more detail in "Health Supervision for Children with Achondroplasia."
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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 Libraryand the LPA Medical Resource Center)
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Q:Does Little People of America have any special resources for parents?
A: Yes. Explore our Parent and Teacher Page.
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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 dwarf 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.
Resources on extended limb-lengthening, including the LPA Medical Advisory Board's assessment and a personal essay by a woman who successfully underwent the surgery, are available in the LPA Online Library.
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Q:Is it possible to adopt children with dwarfism?
A: Yes. Children are available for adoption both within the United States and abroad. There are no shortcuts, however. Adopting a dwarf child is every bit as challenging and arduous a process as adopting an average-stature child. For more information, please go to the Adoption Page.
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