ageneticandinheriteddisordercharacterizedbybrittlebones. LiuZhihuafindsoutwhatlifeislikeforsufferersofthiscruelaffliction.

Six-year-oldWuYulinglong, agirlfromasmallcountyinHanzhongcity, Shaanxiprovince, lookslikea 2-year-old. Herlimbsarethinandherlegsaresodeformedshecanbarelywalk.

"Whenshewasababy, herbonesjustbrokefornoreason," saysherfatherWuLiang.

"Wedarenotholdherforfearofhurtingher."

Thegirlisoneofabout 100,000 "chinadolls" inthecountry. Thetermisusedtodescribethosewhosufferfromosteogenesisimperfecta, ageneticandinheriteddisordercharacterizedbyfragilebones.

AccordingtoChina-DollCenterforRareDisease, anongovernmentalorganization, 70

Theirbonesbreakeasilywithoutanyspecificcause,andanindividualcansufferdozenstohundredsofsignificantfracturesinalifetime, leavingnotonlypainbutalsobonedeformity. percentofsufferersliveinless-privilegedruralareas.

Asurveyreportrecentlyreleasedbythecentershowsthatalthoughsituationsvary, "chinadolls" facesimilarproblemsinlife - pooraccesstomedicalcare, educationandjobopportunities.

"Osteogenesisimperfectaistreatable. Withtimelyandefficientintervention, OIchildrencangrowuphealthilytoliveanormallife," saysWangYi'ou, founderanddirectorofthecenter, whoisalsoanOIpatient.

"But, itisapitythatforthemajorityofOIpatients, itisoftentoolatewhentheyreceivediagnosisandtreatment."

WuLiangsaysinthefirsttwoyearsofherlife, hisdaughtersufferedfromdozensoffracturesanddevelopeddeformitiesasshegrewup.

Thegirlwouldfractureherselfevenwhilelyinginbed. Localdoctorswerecluelessaboutthecondition.

Whenthegirlturned 3, doctorsinahospitalinXi'anfinallymadeadiagnosis: Shebecamethehospital'sfirstOIcase.

Butdoctorstoldthefathertherewasnotreatment, norhopeforrecovery.

Thegirl'sdeformitydevelopedrapidly. Althoughshe'sobviouslysmarterthanherpeers, shewasrefusedbykindergartensandschools.

Lastyear, shefinallyunderwentOItreatmentinahospitalinTianjin, withthehelpofWang'scenter, whichthefatherchanceduponwhensurfingtheInternet.

Currently, toincreasebonedensityandreducethenumberoffractures, thegirlreceivesdruginfusionseverythreetofourmonths, costingabout 2,000 yuan ($326) eachtime.

Thefatheralsoplanstosendherforsurgerytocorrectherdeformity.

WuYulinglongisluckierthanmanyOIpatientsinChinaasherfamilyisabletoaffordhertreatment.

OIisalifelongconditionandneedscontinuoustreatment, includingmedicationtoincreasethedensityofthebones. Otherwise, thebonesandmuscleswilldeformrapidly, especiallyduringchildhood.

ButfewhospitalsinbigcitiesknowhowtotreatOI, letalonethoseinless-developedruralareas, accordingtoQiMing, ageneticdiseasesspecialistwithZhejiangUniversity, whoisalsoaprofessorwithDepartmentofPathologyandLaboratoryMedicine, RochesterUniversityintheUnitedStates.

Hesaysinmanydevelopedcountries, suchastheUnitedStates, thecostofOItreatmentiscoveredbyvariousmedicalinsuranceprograms.

TherearealsoalotofnongovernmentalorganizationsandfoundationsengagedinactivitiesprotectingandhelpingOIpatients, suchasfundingforOI-relatedresearchandlaunchinglegislationcampaignstoprotecttheinterestsofOIpatients. ButtherearefewinChina, Qiadds.

Inaddition, thehighcostoftreatmentandlowinsurancecoveragepreventmostpatientsfromgettingmedicalcare.

Withouttreatment, OIadultscanonlygrowtotheheightofayoungchild, withbowedlimbsandprotrudingchestbones. Mostofthemarenotabletomovearoundwithoutcrutchesorwheelchairs.

Theconditionalsoaffectstheirhearing, teethandbloodvessels.

"Itisaviciouscircle," saysWangLin, 26, anOIpatientfromDalian, Liaoningprovince.

"Withoutmoneyandtreatment, wewillbecomedisabled. Noschoolsarewillingtoacceptadisabledchild, andwehavetoself-study, orremainilliterate.

"Whenwegrowup, wecannotdolaborworkbecauseofourphysicalcondition, andwecannotobtaingoodpositionsincompaniesbecauseoflackofeducation. Asaresult, weearntoolittleforaliving, nottomentiontopayfortreatment."

WangLinworksasareceptionistinanadvertisingfirm. Butherotherfriendswhosufferfromthesameconditionareunemployed.

"SocietyshouldbemoreawareofthesufferingsandneedsofOIpatients, andextendahelpinghandtothem," WangYi'ousays.

Contactthewriteratliuzhihua@chinadaily.com.cn.

(ChinaDaily 08/07/2013 page19)