Chii chinonzi Dwarfism? Zviratidzo, Zvinokonzera, & Kurapa

Dwarfism chirwere chekurapa umo kureba kwemunhu mukuru kuri masendimita 147 kana pasi apa nekuda kwezvikonzero zvemajini kana zvekurapa. Inokanganisa munhu mumwe chete pane vanhu 15,000 kusvika ku40,000 pasi rose, zvichiita kuti rwendo rwemunhu mumwe nemumwe ruve rwakasiyana asi chikamu cheboka guru.

Vanhu vakawanda vane dwarfism vanorarama hupenyu hwazvo, hune hutano uye vanobatanidzwa muzvikamu zvese zvevanhu. Kunyange zvazvo chirwere ichi chinounza zvinhu zvekufunga nezvazvo, hachitsananguri kugona kwemunhu, pfungwa, kana mukana wekufara nekubudirira.

Chii chinonzi dwarfism?

Dwarfism inoreva kureba kwakapfupika kunokonzerwa nemamiriro ezvinhu emajini, matambudziko ekurapa, kana kushomeka kwehomoni yekukura. Rudzi runowanzoitika ndiro achondroplasia, iyo inokanganisa kukura kwemapfupa nemakakatanwa.

Kune marudzi anopfuura 400 e dwarfism, imwe neimwe ine hunhu hwayo. Zvimwe zvinokanganisa kureba chete, nepo zvimwe zvingave zvine zvimwe zvinhu zvemuviri kana zvekufunga nezvazvo.

Shoko rokuti "munhu mudiki" rinowanzodiwa nevakawanda vari mune dwarfism community, sezvo rinotarisa munhu panzvimbo pechirwere. Iri mutauro unoremekedza unobatsira kugadzira hurukuro dzakawanda dzinosanganisira nezve dwarfism.

Ndeapi zviratidzo zve dwarfism?

Chiratidzo chikuru che dwarfism ndicho kureba kwakapfupika kupfuura avhareji, asi zviratidzo zvinosiyana zvakanyanya zvichienderana nerudzi rwakatarwa. Ngationei zviratidzo zvakajairika zvaunogona kuona.

Zvinhu zvemuviri zvinowanzoitika zvinosanganisira:

• Kureba kwemunhu mukuru kwemasendimita 147 kana pasi apa
• Muviri wakajairika saizi nemakumbo mapfupi nemaoko (mune proportionate dwarfism)
• Muviri mupfupi maererano nemiviri (mune disproportionate dwarfism)
• Musoro mukuru kupfuura muviri
• Pamahombekombe kana mhango yepamusoro yemhino yakadzika
• Minwe mipfupi ine kuparadzana kunobvira pakati pemunwe wepakati nemunwe wering

Vamwe vanhu vangave nematambudziko ekugadzirisa majoini kana kurwadziwa kwemuzongoza, kunyanya nemarudzi akati e dwarfism. Zvisinei, vanhu vakawanda havawanikwe nezviratidzo zvimwe kunze kwekuti vakapfupika.

Zvakakosha kuyeuka kuti zviratidzo zvinosiyana zvikuru pakati pevanhu, kunyange nerudzi rumwe chete rwe dwarfism. Vamwe vanhu vangave nezvinhu zvishoma, nepo vamwe vane hunhu hwakajeka.

Ndeapi marudzi e dwarfism?

Dwarfism inowira muzvikamu zviviri zvikuru: proportionate ne disproportionate. Rudzi rumwe nerumwe rwakasiyana zvinokonzera uye hunhu hunokanganisa kuti muviri unokura sei.

Proportionate dwarfism inoreva kuti zvikamu zvese zvemuviri zvidiki asi zvine chiyero chakajairika kune mumwe nemumwe. Rudzi urwu runowanzova nekuda kwekushomeka kwehomoni yekukura kana mamwe mamiriro ekurapa anokanganisa kukura kwese.

Disproportionate dwarfism inosanganisira zvikamu zvimwe zvemuviri zvine saizi yakajairika nepo zvimwe zvichidiki. Muviri ungave une saizi yakajairika nepo maoko nemakumbo akapfupika, kana zvakapesana.

Achondroplasia ndiro rudzi runowanzoitika, rinokanganisa vanhu vanosvika 70% vane dwarfism. Iyo ndiyo imhando ye disproportionate dwarfism umo muviri unowanzova une saizi yakajairika, asi miviri mipfupi.

Mamwe marudzi anosanganisira hypochondroplasia, spondyloepiphyseal dysplasia, uye primordial dwarfism. Imwe neimwe ine zvinhu zvakasiyana uye inogona kusanganisira masisitimu emuviri akasiyana kunze kwekuti kureba.

Chii chinokonzera dwarfism?

Kazhinji kazhinji ye dwarfism inobva pakuchinja kwemajini kunokanganisa kukura kwemapfupa nemakakatanwa. Aya mavariasi emajini anogona kuwanikwa kubva kuvabereki kana kuitika zvisingatarisirwi panguva yekukura kwekutanga.

Vanhu vanosvika 80% vane achondroplasia vane vabereki vane kureba kwakajairika, zvinoreva kuti kuchinja kwemajini kwakaitika zvisingatarisirwi. Izvi zvinoratidza kuti dwarfism inogona kuitika mumhuri chero ipi zvayo, pasinei nehupenyu hwemhuri.

Zvinokonzera zvakajairika zvinosanganisira:

• Kuchinja kwemajini kunokanganisa kukura kwemapfupa (sekuti kuchinja kweFGFR3 gene mu achondroplasia)
• Kushomeka kwehomoni yekukura kubva kumatambudziko egland ye pituitary
• Turner syndrome (inokanganisa vakadzi)
• Chirwere cheitsvo chekare panguva yehudiki
• Kushomeka kwakanyanya kwezvokudya panguva yekukura kwakakosha

Muitiko ushoma, mishonga yakati kana kuiswa kwemwaranzi panguva yekuzvitakura kungabatsira kumatambudziko ekukura. Zvisinei, kazhinji kazhinji ye dwarfism inobva pazvinhu zvemajini zvinoitika zvisingaoneki.

Kunzwisisa chikonzero kunobatsira vanachiremba kupa hanya yakakwana uye kunobatsira mhuri kuziva kuti chii chavanofanira kutarisira. Genetic counseling inogona kupa mazano anokosha kumhuri dzakabatwa nemarudzi ehutsika e dwarfism.

Rini unofanira kuona chiremba nezve dwarfism?

Unofanira kubvunza mushandi wehutano kana kukura kwemwana wako kuchioneka kuri kunonoka zvakanyanya kupfuura shamwari dzavo kana kudonha pasi pemachaati ekukura akajairika. Kuongororwa kwekutanga kunogona kubatsira kuziva chero mamiriro ekutanga uye kutanga kurapwa kwakakodzera.

Kuongororwa kwevana kazhinji kunobata zvinetso zve kukura, asi vimba nezvaunonzwa kana chimwe chinhu chichiita kusingawanzoitika. Chiremba wemwana wako achatungamira mapateni ekukura nekufamba kwenguva, izvo zvakakosha kupfuura kuyera kamwe chete.

Tsvaga hanya yekurapa kana ukaona:

• Kukura kwakagara pasi pe3rd percentile pamachaati ekukura
• Kunonoka kukura kwenguva pfupi
• Zvinhu zvemuviri zvinoratidza marudzi akati e dwarfism
• Matambudziko ekufema kana matambudziko ekurara
• Kunetseka kwemichero kana matambudziko ekunzwa
• Kurwadziwa kwemuzongoza kana matambudziko ekufamba

Kune vakuru vane dwarfism, kushanya kwehutano nguva dzose kunobatsira kutarisira matambudziko anogona kuitika uye kuchengetedza hutano hwese. Kugadzira hukama nevanachiremba vanoziva nezve dwarfism kunogona kuita musiyano mukuru muhunhu hwekurapa.

Ndeapi njodzi dze dwarfism?

Kazhinji kazhinji ye dwarfism inoitika zvisingatarisirwi, asi zvinhu zvimwe zvingawedzera mukana wekuva nemwana ane dwarfism. Kunzwisisa izvi zvinhu kunogona kubatsira mhuri kuita sarudzo dzakakwana nezvekuronga mhuri.

Zera revabereki rakakura zvishoma zvinowedzera mukana wekuchinja kwemajini zvisingatarisirwi izvo zvinogona kukonzera achondroplasia. Zvisinei, njodzi yese inoramba iri shoma kwazvo kumhuri dzese.

Zvinhu zvinokonzera njodzi zvinosanganisira:

• Kuva nemubereki mumwe kana vese vane dwarfism (marudzi ehutsika)
• Zera revabereki vakuru (kupfuura 40)
• Mwana akapfuura ane dwarfism
• Nhoroondo yemhuri yekushomeka kwehomoni yekukura
• Zvirwere zvakati zvemajini mumhuri

Kana vabereki vese vane achondroplasia, mukana we25% wekuva nemwana ane kureba kwakajairika, mukana we50% we achondroplasia, uye mukana we25% wemamiriro akaoma anonzi homozygous achondroplasia.

Genetic counseling usati wazvitakura inogona kubatsira mhuri kunzwisisa njodzi dzavo chaiyo uye kuita sarudzo dzakakwana. Yeuka kuti zvinhu zvinokonzera njodzi hazvirevi zviitiko, uye vana vakawanda vane dwarfism vanoberekwa kumhuri dzisina njodzi dzinozivikanwa.

Ndeapi matambudziko anogona kuitika e dwarfism?

Kunyangwe vanhu vakawanda vane dwarfism vanorarama hupenyu hunotano pasina matambudziko makuru, mamwe marudzi anogona kusanganisira zvekufunga nezvazvo zvekurapa. Kuziva nezvezvinhu zvinogona kuitika kunobatsira kuve nechokwadi chekutarisa kwakakodzera uye kuita kwekutanga kana zvichidikanwa.

Matambudziko chaiwo anotsamira zvakanyanya nerudzi rwe dwarfism, uye vanhu vakawanda havawanikwe nematambudziko ehutano kunze kwekuti vakapfupika.

Matambudziko anogona kuitika anogona kusanganisira:

• Sleep apnea nekuda kwezvikwereti zvidiki
• Kunetseka kwemichero kunotungamira pakunzwa kwakashata
• Spinal stenosis (kuomarara kwechiteshi chemzongoza)
• Kutemwa kwemakumbo kana mamwe kusagadzikana kwemapfupa
• Matambudziko emajoini, kunyanya mumabvi nemahudyu
• Kuwedzera kwemazino nekuda kwekunyanya kuwanda kwejaw
• Njodzi yakakwira yekuzvimba

Matambudziko asingawanzoitika asi akakomba anosanganisira:

• Hydrocephalus (kuunganidzwa kwemvura mubongoza)
• Kuomarara kwemuzongoza
• Matambudziko emwoyo (mumhando dzakati)
• Matambudziko ekufema muhucheche

Kuongororwa kwehutano nguva dzose kunobatsira kubata matambudziko anogona kuitika pakutanga kana ari kurapika zvikuru. Matambudziko mazhinji anogona kutarisirwa zvakakwana nehanya yekurapa yakakodzera, zvichiita kuti vanhu vane dwarfism varambe vachishanda, hupenyu hunotano.

Dwarfism inogona kudzivirirwa sei?

Marudzi mazhinji e dwarfism haagone kudzivirirwa nekuti anobva pakuchinja kwemajini zvisingatarisirwi kana mamiriro ehutsika emajini. Zvisinei, kunzwisisa nhoroondo yemajini yemhuri yako kunogona kubatsira kuzivisa sarudzo dzekuronga mhuri.

Kune marudzi ehutsika e dwarfism, genetic counseling usati wazvitakura inogona kubatsira vakaroorana kunzwisisa njodzi dzavo uye kuongorora sarudzo dziripo. Iri ruzivo rinopa simba mhuri kuita sarudzo dzakakwana dzinoenderana nemafambiro avo nemamiriro avo.

Kuongororwa kwepamuviri, kusanganisira ultrasound uye kuongororwa kwemajini, kunogona dzimwe nguva kuona marudzi akati e dwarfism panguva yekuzvitakura. Iri ruzivo runobatsira mhuri kugadzirira uye kubatana nezviwanikwa zvekupa rubatsiro pakutanga.

Kune kushomeka kwehomoni yekukura-kwakabatana ne dwarfism, kuonekwa kwekutanga nekurapa kunogona dzimwe nguva kubatsira kuvandudza kureba kwemunhu mukuru. Kuchengetedzwa kwevana nguva dzose uye kutarisisa mapateni ekukura ndizvo zvakakosha.

Kunyangwe kudzivirira kuchigoneki kune kazhinji kazhinji, kutarisisa hutano hwese panguva yekuzvitakura kunotsigira kukura kwakakwana kwemwana. Izvi zvinosanganisira kudya kwakakodzera, mavhitamini epamuviri, kudzivisa zvinhu zvinokuvadza, uye kuchengetedzwa kwepamuviri nguva dzose.

Dwarfism inoziviswa sei?

Kuziva kwe dwarfism kazhinji kunosanganisira kuyera kureba uye kuenzanisa nemachati ekukura akajairika, pamwe nekuongororwa kwemuviri uye kuongororwa kwenhoroondo yemhuri. Maitiro acho anowanzova nyore uye asingakuvadzi.

Chiremba wako achatungamira mapateni ekukura nekufamba kwenguva panzvimbo pekutsamira pakuyera kamwe chete. Kukura kwakagara pasi pemazinga anotarisirwa, pamwe nezvinhu zvemuviri, kunobatsira kutungamira maitiro ekurapa.

Nzira dzekuongorora dzinosanganisira:

• Kuyera kureba nehuremu nguva dzose kunoratidzwa pamachaati ekukura
• Kuongororwa kwemuviri kwezvinhu zvakajairika
• X-rays kuti uongorore kukura kwemapfupa nechiyero
• Kuongororwa kwemajini kuti uzive marudzi chaiwo
• Kuongororwa kwehomoni yekukura kana kushomeka kuchifungidzirwa
• Nhoroondo yemhuri nehupenyu hwekuzvitakura

Kuongororwa kwepamuviri kunogona kuitika dzimwe nguva kuburikidza ne ultrasound, izvo zvinogona kuratidza miviri mipfupi kana zvimwe zvinhu. Kuongororwa kwakakosha kwemajini kunogona kuziva mamiriro chaiwo usati waberekwa.

Kuwana kuongororwa kwakakwana kunobatsira timu yako yehutano kupa hanya yakakwana uye kukubatanidza nezviwanikwa zvakakodzera nemagrupo ekutsigira. Zvinobatsirawo mhuri kunzwisisa kuti chii chavanofanira kutarisira uye kuronga zvakakodzera.

Kurapa kwe dwarfism ndechii?

Kurapa kwe dwarfism kunotarisa pakutarisira chero matambudziko ehutano anobatanidzwa uye kutsigira hupenyu hwese. Hapana kurapa kunochinja zvakanyanya kureba kwemunhu mukuru kune marudzi mazhinji e dwarfism, uye vanhu vakawanda havadi kurapwa kwakawanda.

Maitiro acho anotsamira zvachose nerudzi rwakatarwa rwe dwarfism uye chero matambudziko anobatanidzwa. Vanhu vakawanda vane dwarfism vanorarama hupenyu hunotano nekuita kwakaderera kwemishonga.

Sarudzo dzekurapa dzinogona kusanganisira:

• Kurapa kwehomoni yekukura (yekushomeka kwehomoni yekukura chete)
• Maitiro ekurapa ekusagadzikana kwemapfupa kana matambudziko
• Kurapa kwemuviri kuchengetedza kufamba nesimba
• Kurapa kwe sleep apnea (machini eCPAP, kurapwa)
• Zvishandiso zvekunzwa kwekunzwa kwakashata
• Kutarisira marwadzo emajoini kana matambudziko emuzongoza
• Zano rekudya kuchengetedza uremu hunotano

Kuita kwakakakavadzana kwekuwedzera kureba kwemigumo kuripo asi kunosanganisira njodzi huru uye nguva refu yekudzorera. Vanachiremba vakawanda nevanhu vane dwarfism havazvirumbidzi aya maitiro nekuda kwezvinhu zvinogona kuitika uye mabhenefiti mashoma.

Kutarisisa kunofanira kunge kuri pakurapa matambudziko chaiwo ehutano panzvimbo yekuedza kuchinja kureba. Iri maitiro anotungamira kumigumisiro iri nani uye hupenyu hwakanaka kune vanhu vakawanda.

Maitiro ekutarisira dwarfism kumba?

Kutarisira kumba kwe dwarfism kunosanganisira kugadzira nharaunda inowanikwa uye kuchengetedza hutano hwese. Kugadziriswa kwakapusa kunogona kuita kuti mabasa ezuva nezuva ave nyore uye anofadza.

Tarisa pakukurudzira kuzvimiririra uchivimbisa kuchengetedzeka. Zvishandiso zvakawanda zvakagadziridzwa uye kugadziriswa kuripo kubatsira nemabasa ezuva nezuva kumusha.

Kugadziriswa kwekumba kunogona kusanganisira:

• Zvigaro zvekusvika pamusoro zvakakwirira
• Zvishandiso zvemagetsi zvakaderedzwa, mabhatani emagedhi, nezvishandiso zvekugezera
• Pedals yakarebesa kana kugadziriswa kwechigaro chekutyaira
• Mabara ekubata mumabhati kuchengetedza
• Zvigadziriso zvekuchengetedza zvinowanikwa pakukwirira kwakakodzera

Kutarisira hutano kumba kunosanganisira:

• Kuchengetedza uremu hunotano kuburikidza nekudya kwakaringana nekuita zvemitambo
• Kuita zvemitambo nguva dzose kwakakodzera kugona kwako
• Kurara kwakanaka, kunyanya kana sleep apnea iri nyaya
• Kutarisira kwakanaka kwemichero kudzivirira kunetseka
• Kutarisira kwemuzongoza nemaitiro akanaka ekumira

Kuvaka chivimbo nehunhu hwekuzvidzivirira ndicho chinhu chakakosha. Kubatana nemagrupo ekutsigira dwarfism nemasangano kunogona kupa zviwanikwa zvinokosha nehukama hwevanhu.

Unofanira kugadzirira sei kusangana kwako nachiremba?

Kugadzirira kusangana kwemishonga kunobatsira kuve nechokwadi chekuti unowana hanya yakakwana sezvinobvira. Kuunza ruzivo rwakakodzera nemibvunzo kunoita kuti kushanya kuve kunobatsira kune wese munhu anobatanidzwa.

Chengetedza rekodhi yakadzama yezviratidzo, zvinetso, uye chero kuchinja kwaona. Iri ruzivo runobatsira chiremba wako kunzwisisa mamiriro ako zviri nani uye kuita sarudzo dzakakwana nezve hanya.

Usati wasangana:

• Rondedzera zviratidzo zvese zviripo kana zvinetso
• Unganidza rekodhi dzekurapa dzapfuura nemhedzisiro yekuongorora
• Gadzira rondedzero yemishonga iripo nezvinowedzerwa
• Nyora mibvunzo yaunoda kubvunza
• Uya nemhuri kana shamwari yekutsigira kana zvichinakidza
• Ongorora kuchengetedzwa kwako kweinshorensi kune chero kurapwa kunokurudzirwa

Mibvunzo yekufunga kubvunza:

• Nderudzi rwei dwarfism ini kana mwana wangu ndinawo?
• Ndeapi matambudziko atinofanira kutarisa?
• Kazhinji sei tinofanira kuva nekusangana kwekuongorora?
• Kune nyanzvi dzatinofanira kuona here?
• Ndeapi mabasa akachengeteka uye anokurudzirwa?
• Tingawana kupi magrupo ekutsigira kana zviwanikwa?

Usazengurire kukumbira kuti ujekeswe kana usinganzwisisi chimwe chinhu. Chiremba wako anoda kuve nechokwadi chekuti unonzwa wakaziva uye wakasununguka nechirongwa chekurapa.

Chii chinonyanya kukosha nezve dwarfism?

Dwarfism chirwere chekurapa chinokanganisa kureba, asi hachitsananguri mukana wemunhu, pfungwa, kana kugona kurarama hupenyu hunofadza. Nekurapa kwakakodzera nekutsigira, vanhu vane dwarfism vanobatanidzwa zvizere muzvikamu zvese zvevanhu.

Chinhu chakakosha kunzwisisa ndechekuti dwarfism chimwe chezvinhu zvemunhu, zvakafanana nevara revanhu kana ruvara rwemaziso. Vanhu vane dwarfism vane zviroto zvakafanana, zvinangwa, uye kugona sevamwe vanhu.

Kuongororwa kwekutanga nekurapa kwakakodzera kunogona kubatsira kutarisira chero matambudziko ehutano anobatanidzwa zvakakwana. Kuvaka network yakasimba yekutsigira uye kubatana ne dwarfism community inopa zviwanikwa zvinokosha nehushamwari.

Kana iwe kana mwana wako ane dwarfism, tarisa pane zvaunokwanisa kuita panzvimbo pezvausingakwanisi. Nekutsigira kwakakodzera, kurapwa kwemishonga, uye nzira dzakagadziridzwa, hapana chikonzero chekuti dwarfism idzivise munhu chero upi zvawo kubudirira zvinangwa zvavo uye kurarama nekufara.

Mibvunzo inowanzo bvunzwa nezve dwarfism

Dwarfism inowanikwa kubva kuvabereki here?

Vanhu vanosvika 80% vane rudzi runowanzoitika rwe dwarfism (achondroplasia) vane vabereki vane kureba kwakajairika, zvinoreva kuti kwakaitika zvisingatarisirwi. Zvisinei, kana mubereki mumwe ane dwarfism, mukana we50% wekupasa kune mwana mumwe nemumwe. Kana vabereki vese vane dwarfism, mapateni ehutsika anoita akaoma uye anoda genetic counseling kunzwisisa zvizere.

Vanhu vane dwarfism vanogona kuva nevana vane kureba kwakajairika here?

Hungu, vanhu vane dwarfism vanogona kuva nevana vane kureba kwakajairika. Kutaura zvazviri, kana mubereki mumwe ane achondroplasia uye mumwe ane kureba kwakajairika, mukana we50% wekuti mwana mumwe nemumwe ave nekureba kwakajairika. Genetics inosiyana nerudzi rwe dwarfism, saka kukurukura kuronga mhuri ne genetic counselor kunogona kupa ruzivo rwakakosha kune mamiriro ako.

Chii chiri musiyano pakati pemunhu ane dwarfism nemunhu mudiki?

Aya mazwi ose ari maviri anoreva vanhu vane dwarfism, asi "munhu mudiki" anowanzodiwa ne dwarfism community sezvo ari ane mutsa uye anotarisa munhu. Shoko rokuti "dwarf" rinogona dzimwe nguva kunzwa sechirwere kana rakaremara, kunyange vamwe vanhu vanofara nezwi rimwe nerimwe. Chinhu chakakosha ndechekuti unofanira kuremekedza munhu wese uye kubvunza nezve zvaanoda kana usingazivi.

Kurapa kwehomoni yekukura kunogona kuita kuti munhu ane dwarfism ave kureba here?

Kurapa kwehomoni yekukura kunoshanda chete kune vanhu vane dwarfism yakakonzerwa nekushomeka kwehomoni yekukura, iyo isingawanzoitika. Kune marudzi ehutsika se achondroplasia, homoni yekukura haina kuwedzera zvakanyanya kureba kwemunhu mukuru. Kutanga kurapwa pakutanga muhudiki ndicho chinhu chakakosha kuti chibudirire, uye chinodiwa makore ekudururira zuva nezuva nekuongororwa nguva dzose.

Kune mabasa api anogona kuitwa nevanhu vane dwarfism here?

Vanhu vane dwarfism vanogona kubatanidzwa mune zvese zviitiko nezvigadziriso zvakakodzera kana kugadziriswa. Vamwe vangada midziyo yakagadziridzwa yemitambo, nzvimbo dzekushandira dzakagadziridzwa mabasa, kana kugadziriswa kwemotokari yekutyaira. Zvimwe zviitiko zvine simba zvinogona kudzvinyirirwa kana paine zvinetso zvemuzongoza, asi vanhu vakawanda vane dwarfism vanotungamira hupenyu hunoshanda kusanganisira mitambo, mabasa, kufamba, uye zvinofadza sezvinoita vamwe vanhu.