Dwarfism: Types, History, and Support Lia McNeilly
Medical Facts about Dwarfism Community Resources in the United States, and Beyond Dwarfism and the Disability Community
● 200 types of dwarfism including short-trunk, short-limb, ● Li le People of America (LPA) is an advocacy group for people with dwarfism. ● The Americans with Disabili es Act (ADA) protects the propor onate, and pituitary ● LPA Na onal conferences feature Medical Advisory Boards (MAB), informa on and support rights of people with dwarfism. ● Causes of dwarfism: spontaneous gene c altera on, changes sessions, and social events. ● Many types of dwarfism do have orthopedic in the egg or sperm cells, or by genes inherited from one or ● LPA offers adop on services, scholarships and grants, advocacy and community outreach considera ons, but all types of dwarfism have both parents ● There are 14 regions within LPA, comprised of local chapters, with bi-annual mee ngs accessibility needs, such as reaching gas pumps, ATMs, pay phones, elevator bu ons, and more. ● Also caused by chromosomal abnormali es, pituitary gland ● MAB medical professionals are experts in skeletal dysplasia that donate their me, and pay their disorders, absorp ve problems, and kidney problems. own way, to do consulta ons at na onal and regional LPA conferences, some mes being the only ● Most children will need accommoda ons at school, which ● Different types of dwarfism have different medical professional people will ever meet that is knowledgeable about dwarfism. are covered under Sec on 504 of the Individuals with Disabili es Educa on Act. Common accommoda ons complica ons, but all have specific medical needs. ● Many people travel to regional Skeletal Dysplasia Centers around the United States in order to are: more me to pass between classes without penalty, ● Anesthesia complica ons are a deadly concern for a group of receive expert medical care. O en, people pay significant sums to go these centers. more me on tests if manual dexterity is an issue, a people with restricted airways due to size and spinal issues ● LPA has an advisor to ANSI, which helps recommend accessible building codes in the US. lowered swing or tether ball line, a step stool (portable or ● Hearing loss, speech delays, and re nal detachments are ● Understanding Dwarfism is an educa on site for helping the general popula on understand permanent) in the bathrooms and at water fountains, common in many types of dwarfism dwarfism, and to spread awareness. easy open door handle levels (not knobs), a light pressure ● Usually no taller than 4 foot 10 inches, although some types ● Other countries have their own versions of LPA, such as the Restricted Growth Associa ons of on automa c door closure se ngs, a lowered mirror in of skeletal dysplasias can be average height. Ireland and Britain, and LPUK. Facebook groups, which came from Yahoo groups such as POLP the bathroom, a lowered paper towel dispenser, modified ● 80% of Li le People are born to average height parents (Parents of Li le People) and Dwarfism, help raise awareness globally. requirements for PE ● Dwarfism occurs in all races and ethnici es ● Camp Victory Junc on in Randleman, NC added a Skeletal Dysplasia Summer Camp week for 2016 ● Many people with dwarfism struggle to find gainful employment a er university ● Pediatricians have limited knowledge beyond achondroplasia ● People with dwarfism are qualified to use Centers for ● Spinal fusions, joint replacements, foramen magnum, and Independent Living and Voca onal Rehab, but o en they other major orthopedic & neuro-surgeries are common. Here you see four types of dwarfism, along with their average height siblings. are not aware of these resources. ● BioMarin has BMN 111 in clinical trials; it aims to eliminate L-R AH (average height), age 7; SED, age 9; SEMD, achondroplasia, and has huge bioethical considera ons. age 9; Kniest Dysplasia, age 8; AH, age 10, AH, age 6; Achondroplasia, age 8; SED, age 9. References & Further Readings
Interes ng Facts about Dwarfism SED, SEMD & Kniest are all short-trunk types of ❖ www.dwarfparents.com/bmn-111 dwarfism, while achondroplasia and diastrophic dysplasia, the most common types, are short-limb ❖ www.beyondachondroplasia.org/blogue/?lang-en ● The first known dwarf lived more than 11,000 years ago; his dwarfism. An adult with Kniest may reach average ❖ grave was discovered in southern Italy in 1963 height in spite of significant skeletal dysplasia. Kennedy, Dan. (2003) Li le People: Learning to See the World Through My Daughter's Eyes Rodale Press, Inc. ● Dwarfism has been seen in Egyp an sculptures, royal Billy Barty, founder of LPA, had SED. Peter Dinklage, of Game of Thrones fame, has achondroplasia, as ❖ Adelson, Be y M. (2005) The Lives of Dwarves: Their Journey European courts, sacred Hindu texts on Vamana do Amy and Zach Roloff. Amy's husband, Ma , has diastrophic dysplasia. Jen and Bill Klein of “The from Public Curiosity toward Social Libera on. New Brunswick, ● The word “midget' was coined in 1865, to define 'an Li le Couple” both have SED, which has a large New Jersey, London: Rutgers University Press extremely small person; spec. such a person publicly range in adult height. ❖ Van E en, Angela Muir. (1988) Dwarves Don't Live In Doll exhibited as a curiosity.” It is derived from the word midge, Houses. Rochester, NY: Adap ve Living which is a small insect. It is considered highly offensive. ACKNOWLEDGEMENTS ❖ Roloff, Ma . (1999) Against Tall Odds Oregon: Multnomah ● The Mauthausen concentra on camp did medical Publishers, Inc. experiments on people with dwarfism & other disabili es ❖ Li le People of America, www.lpaonline.org ❖ Solomon, Andrew. (2012) Far From The Tree: Parents, ● All of the Munchkins in the Wizard of Oz had pituitary ❖ Understanding Dwarfism, www.udprogram.com Children, and the Search for Iden ty. New York: Scribner dwarfism, which has largely been eradicated in the US with ❖ Kniest SED Group, www.ksginfo.org/aboutus.html the availability of Human Growth Hormone ❖ Suzanne Speiss, Denise Aguiar, Amy Lyons, Amber Marion