Dwarfism: Types, History, and Support
Lia McNeilly
MedicalFactsaboutDwarfism
●  200typesofdwarfismincludingshort-trunk,short-limb,
propor=onate,andpituitary
●  Causesofdwarfism:spontaneousgene=caltera=on,changes
intheeggorspermcells,orbygenesinheritedfromoneor
bothparents
●  Alsocausedbychromosomalabnormali=es,pituitarygland
disorders,absorp=veproblems,andkidneyproblems.
●  Differenttypesofdwarfismhavedifferentmedical
complica=ons,butallhavespecificmedicalneeds.
●  Anesthesiacomplica=onsareadeadlyconcernforagroupof
peoplewithrestrictedairwaysduetosizeandspinalissues
●  Hearingloss,speechdelays,andre=naldetachmentsare
commoninmanytypesofdwarfism
●  Usuallynotallerthan4foot10inches,althoughsometypes
ofskeletaldysplasiascanbeaverageheight.
●  80%ofLiMlePeopleareborntoaverageheightparents
●  Dwarfismoccursinallracesandethnici=es
●  Pediatricianshavelimitedknowledgebeyondachondroplasia
●  Spinalfusions,jointreplacements,foramenmagnum,and
othermajororthopedic&neuro-surgeriesarecommon.
●  BioMarinhasBMN111inclinicaltrials;itaimstoeliminate
achondroplasia,andhashugebioethicalconsidera=ons.
InteresJngFactsaboutDwarfism
●  Thefirstknowndwarflivedmorethan11,000yearsago;his
gravewasdiscoveredinsouthernItalyin1963
●  DwarfismhasbeenseeninEgyp=ansculptures,royal
Europeancourts,sacredHindutextsonVamana
●  Theword“midget'wascoinedin1865,todefine'an
extremelysmallperson;spec.suchapersonpublicly
exhibitedasacuriosity.”Itisderivedfromthewordmidge,
whichisasmallinsect.Itisconsideredhighlyoffensive.
●  TheMauthausenconcentra=oncampdidmedical
experimentsonpeoplewithdwarfism&otherdisabili=es
●  AlloftheMunchkinsintheWizardofOzhadpituitary
dwarfism,whichhaslargelybeeneradicatedintheUSwith
theavailabilityofHumanGrowthHormone
DwarfismandtheDisabilityCommunity
CommunityResourcesintheUnitedStates,andBeyond
●  LiMlePeopleofAmerica(LPA)isanadvocacygroupforpeoplewithdwarfism.
●  LPANa=onalconferencesfeatureMedicalAdvisoryBoards(MAB),informa=onandsupport
sessions,andsocialevents.
●  LPAoffersadop=onservices,scholarshipsandgrants,advocacyandcommunityoutreach
●  Thereare14regionswithinLPA,comprisedoflocalchapters,withbi-annualmee=ngs
●  MABmedicalprofessionalsareexpertsinskeletaldysplasiathatdonatetheir=me,andpaytheir
ownway,todoconsulta=onsatna=onalandregionalLPAconferences,some=mesbeingtheonly
professionalpeoplewillevermeetthatisknowledgeableaboutdwarfism.
●  ManypeopletraveltoregionalSkeletalDysplasiaCentersaroundtheUnitedStatesinorderto
receiveexpertmedicalcare.O_en,peoplepaysignificantsumstogothesecenters.
●  LPAhasanadvisortoANSI,whichhelpsrecommendaccessiblebuildingcodesintheUS.
●  UnderstandingDwarfismisaneduca=onsiteforhelpingthegeneralpopula=onunderstand
dwarfism,andtospreadawareness.
●  OthercountrieshavetheirownversionsofLPA,suchastheRestrictedGrowthAssocia=onsof
IrelandandBritain,andLPUK.Facebookgroups,whichcamefromYahoogroupssuchasPOLP
(ParentsofLiMlePeople)andDwarfism,helpraiseawarenessglobally.
●  CampVictoryJunc=oninRandleman,NCaddedaSkeletalDysplasiaSummerCampweekfor2016
Hereyouseefourtypesofdwarfism,alongwith
theiraverageheightsiblings.
L-RAH(averageheight),age7;SED,age9;SEMD,
age9;KniestDysplasia,age8;AH,age10,AH,age
6;Achondroplasia,age8;SED,age9.
SED,SEMD&Kniestareallshort-trunktypesof
dwarfism,whileachondroplasiaanddiastrophic
dysplasia,themostcommontypes,areshort-limb
dwarfism.AnadultwithKniestmayreachaverage
heightinspiteofsignificantskeletaldysplasia.
BillyBarty,founderofLPA,hadSED.PeterDinklage,
ofGameofThronesfame,hasachondroplasia,as
doAmyandZachRoloff.Amy'shusband,MaM,has
diastrophicdysplasia.JenandBillKleinof“The
LiMleCouple”bothhaveSED,whichhasalarge
rangeinadultheight.
ACKNOWLEDGEMENTS
❖ LiMlePeopleofAmerica,www.lpaonline.org
❖ UnderstandingDwarfism,www.udprogram.com
❖ KniestSEDGroup,www.ksginfo.org/aboutus.html
❖ SuzanneSpeiss,DeniseAguiar,AmyLyons,AmberMarion
●  TheAmericanswithDisabili=esAct(ADA)protectsthe
rightsofpeoplewithdwarfism.
●  Manytypesofdwarfismdohaveorthopedic
considera=ons,butalltypesofdwarfismhave
accessibilityneeds,suchasreachinggaspumps,ATMs,
payphones,elevatorbuMons,andmore.
●  Mostchildrenwillneedaccommoda=onsatschool,which
arecoveredunderSec=on504oftheIndividualswith
Disabili=esEduca=onAct.Commonaccommoda=ons
are:more=metopassbetweenclasseswithoutpenalty,
more=meontestsifmanualdexterityisanissue,a
loweredswingortetherballline,astepstool(portableor
permanent)inthebathroomsandatwaterfountains,
easyopendoorhandlelevels(notknobs),alightpressure
onautoma=cdoorclosurese]ngs,aloweredmirrorin
thebathroom,aloweredpapertoweldispenser,modified
requirementsforPE
●  Manypeoplewithdwarfismstruggletofindgainful
employmenta_eruniversity
●  PeoplewithdwarfismarequalifiedtouseCentersfor
IndependentLivingandVoca=onalRehab,buto_enthey
arenotawareoftheseresources.
References&FurtherReadings
❖ www.dwarfparents.com/bmn-111
❖ www.beyondachondroplasia.org/blogue/?lang-en
❖ Kennedy,Dan.(2003)Li$lePeople:LearningtoSeetheWorld
ThroughMyDaughter'sEyesRodalePress,Inc.
❖ Adelson,BeMyM.(2005)TheLivesofDwarves:TheirJourney
fromPublicCuriositytowardSocialLiberaDon.NewBrunswick,
NewJersey,London:RutgersUniversityPress
❖ VanEMen,AngelaMuir.(1988)DwarvesDon'tLiveInDoll
Houses.Rochester,NY:Adap=veLiving
❖ Roloff,MaM.(1999)AgainstTallOddsOregon:Multnomah
Publishers,Inc.
❖ Solomon,Andrew.(2012)FarFromTheTree:Parents,
Children,andtheSearchforIdenDty.NewYork:Scribner