Uri kunetseka zvishoma nezvehurefu hwemwana wako here? Ngatitaurei nezve dwarfism (Dwarfism / Skeletal Dysplasia) nezvimwe zvinokonzera hurefu hupfupi.

Mwana wako mupfupi pane vamwe vana here? Kana kuti unofunga kuti mitezo yake mipfupi kana tichienzanisa nemimwe miviri yake? Dzimwe nguva izvi zvinogona kuva zvakajairika. Zvisinei, dzimwe nguva zvinogona kuva zviratidzo zvechirwere. Nhasi tichataura nezvechirwere chakadai, dwarfism , kana kuti mumashoko ekurapa , skeletal dysplasia, nezvimwe zvinokonzera hurefu hupfupi. Usazvidya mwoyo, zvakakosha kuziva izvi.

Zvichitaurwa zviri nyore, chii chinonzi dwarfism?

Chirwere che "dwarfism", kana kuti chatinodaidza kuti Skeletal Dysplasia , hachisi chirwere chimwe chete. Ishoko rezvekurapa rinosanganisira mazana ezvirwere zvinokanganisa kukura kwemapfupa nekatsi. Izvi zvinonyanya kukonzera kuti kureba kwemunhu kuderedzwa, kana kuti kupfupika. Kazhinji, munhu ane chirwere ichi anenge akareba pasi pemamita 1.47 kana ava mukuru.

Vamwe vanhu vanoda kushandisa izwi rekuti "vanhu vadiki" kutsanangura vanhu vane chirwere ichi. Zvisinei, kushandisa mazwi akadai sekuti "midgets" hakuna kukodzera zvachose, sezvo kunogona kukuvadza manzwiro avo.

Kune mhando dzakasiyana dze dwarfism. Matambudziko aya anogona kukanganisa kukura kwemapfupa munzvimbo dzakasiyana dzemuviri wedu, kunyanya maoko, makumbo, dumbu, nemusoro.

Ndedzipi mhando dzakajairika dze skeletal dysplasia?

Kune mazana emhando dze dwarfism dzinokanganisa kukura kwemapfupa. Heano mashoma acho:

• Achondroplastic dwarfism: Iyi ndiyo mhando inonyanya kuzivikanwa ye dwarfism. Makumbo mapfupi nehuma yakajeka ndizvo zvinonyanya kuoneka.
• Hypochondroplasia dwarfism: Iyi imhando ye dwarfism isina kunyanya kuomarara ine makumbo mapfupi. Zvisinei, zviratidzo zvayo hazvionekwi zvakanyanya panguva yehucheche.
• Kusanyatsonzwisisa kwepituitary dwarfism: Izvi zvinokonzerwa nekushaikwa kwehomoni yekukura .
• Primordial dwarfism: Murudzi urwu, muviri mudiki kubva pakuzvarwa usati waberekwa uye pamatanho ese ehupenyu.
• Thanatophoric dysplasia: Iyi imhando isingawanzoitiki uye yakanyanya kuoma ye dwarfism. Mumamiriro ezvinhu aya, makumbo mapfupi uye chipfuva chakatetepa. Vana vane chirwere ichi vanowanzofa mukati memazuva mashoma ekuzvarwa nekuda kwematambudziko ekufema.

Funga nezvazvo nenzira iyi: mapfupa ari mumuviri wedu akafanana nembiru dzinoshandiswa kuvaka imba. Kana paine shanduko mukukura kwembiru idzi, zvinoita sekunge chimiro nekukwirira kweimba yese zvinochinja.

Chii chaizvo chinorehwa neshoko rekuti "Short Stature"?

Izwi rekuti "mupfupi" rinoreva munhu mupfupi pane zvaitarisirwa kana tichienzanisa nevamwe vezera rimwe chete.Muvana vadiki, izvi zvinogona kureva kuti kureba kwavo kuri pasi pekukura kwakajairika, kana kuti vari pasi pekukwirira kunotarisirwa zvichienderana nekureba kwevabereki vavo.

Kureba kwemunhu (kana kureba kwemwana mucheche) kunoenderana nezvinhu zvakati wandei. Izvi zvinosanganisira zvinhu zvakaita sehurefu hwevabereki, huremu hwavo, uye huwandu hwemahormone. Kupfupika kwehurefu kunogonawo kukonzerwa nematambudziko akasiyana-siyana ekuberekwa.

Ndiani anonyanya kukanganiswa ne dwarfism?

Skeletal Dysplasia inogona kukanganisa chero ani zvake. Mamwe marudzi ayo ane majini . Izvi zvinoreva kuti anogona kugarwa nhaka kubva kuvabereki. Mamwe marudzi anokonzerwa nekuchinja kweDNA. Kazhinji, asi kwete nguva dzose, vana vane dwarfism vanoberekwa nevabereki vane hurefu hwakajairwa.

Dambudziko iri rakajairika zvakadii?

Chirwere cheSkeletal Dysplasia chinowanzoitika kakawanda. Chirwere ichi, chinonzi achondroplasia, chinobata munhu mumwe chete pavanhu 15,000 kusvika 40,000.

Kusava nepfungwa dzakanaka kunokanganisa sei muviri wako?

Kuora kwemapfupa (Skeletal Dysplasia) kunokanganisa kukura kwemapfupa ako . Mapfupa marefu ari mumaoko ako nemakumbo ndiwo anonyanya kukanganiswa. Zvisinei, mamwe mapfupa, kusanganisira ari mudumbu nemusoro wako, anogonawo kukanganiswa. Zviratidzo zvehupfupi zvinogona kukanganisa dzimwe nhengo dzemuviri wako. Zvinogonawo kutungamira kumatambudziko ehutano kwenguva refu, akadai sekushaya simba kwetsandanyama kana hutachiona hwenguva dzose .

Ndezvipi zviratidzo zve dwarfism?

Chiratidzo chikuru uye chinowanzoonekwa che skeletal dysplasia ipfupi. Munhu ane chirwere ichi anowanzo kureba pasi pe 1.47 metres kana akura. Hupfupi uhwu hunoonekwa zvakanyanya muvanhu vakuru nevakuru kupfuura muhudiki.

Zvizhinji zvinokonzera hurefu hupfupi zvinoenderana . Kureva kuti, muviri wese mupfupi, kwete chikamu chimwe chete. Zvisinei, mune mamwe marudzi ehupfupi, hurefu uhwu hupfupi hahuenzaniswi . Kureva kuti, hunde hwacho hwakafanana asi maoko nemakumbo mapfupi.

Zvimwe zviratidzo zve dwarfism zvinogona kusanganisira:

• Makumbo akakotama.
• Zambuko remhino rakati sandara (chikamu chine mapfupa chiri pamusoro pemhino).
• Musoro mukuru.
• Huruva inoonekwa.
• Maoko nemakumbo mapfupi.
• Zvigunwe nezvigunwe zvipfupi.
• Maoko netsoka dzakafara.

Dzimwe nguva, kukura kwemapfupa kusingawanzoitiki kunogona kukonzera mamwe matambudziko ehutano pamusoro pezviratidzo izvi. Semuenzaniso:

• Kuunganidzwa kwemvura yakatenderedza uropi (Hydrocephalus).
• Tsinga dzakamanikidzwa.
• Kurwara neScoliosis.
• Zvirwere zvemunzeve kana matambudziko ekunzwa.
• Kurwadziwa kwebvi netsoka.
• Kutadza kufema zvakanaka pakurara.

Ndezvipi zvinokonzera chidiki?

Kusashanda zvakanaka kwemapfupa kunogona kukonzera zvinhu zvakasiyana-siyana. Kazhinji, kunokonzerwa nekuchinja kweDNA yemunhu (genetic mutation) . Zvisinei, chikonzero chaicho chemamwe marudzi hachisati chazivikanwa.

Pane zvikonzero zvikuru zvinoverengeka:

• Nhoroondo yemhuri: Kana vabereki nevamwe vemumhuri vapfupi, zvingave zvakajairika kuti mwana ave mupfupiwo.
• Kuchinja kwemajini: Kuchinja kunoitika muDNA yemunhu.
• Kushaikwa kwehomoni yekukura: Uropi hahugadziri homoni yakakwana inodiwa pakukura kwemapfupa.
• Kunonoka kubereka / kunonoka kwemuviri: Vamwe vana vanokura kwenguva refu kupfuura vezera ravo. Dzimwe nguva vamwe vemumhuri vanogonawo kuva nemaitiro aya ekukura.
• Kushaya chikafu chakakwana: Kusawana chikafu chakakwana kunogona kukanganisa kukura kwemwana.
• Vana vadiki pazera rekuzvitakura: Vana vazhinji vadiki pakuzvarwa vanosvika pakukura kwakaringana mukati memakore maviri kusvika matatu, asi vanenge 10% havadaro.

Ko hudiki hunokonzerwa nemajini here?

Ehe, mamwe marudzi e dwarfism (anokonzerwa neSkeletal Dysplasia) ane majini. Kureva kuti, anokonzerwa nekuchinja kweDNA. Kazhinji, kuchinja kwemajini uku kunoitika netsaona, kwete chimwe chinhu chinotorwa kubva kuvabereki vapfupi. Kureva kuti, vana vazhinji vane dwarfism vane vabereki vakareba zvakanaka.

Zvisinei, kana mumwe wevabereki kana vese vane dwarfism, mwana anogona kugara nhaka chirwere ichi. Zvinoenderana nerudzi rwedwarfism. Semuenzaniso, kana amai kana baba vane achondroplasia, mwana ane mukana we50% wekugara nhaka chirwere ichi. Kana vabereki vese vaine achondroplasia, mwana ane mukana we25% wekuva nechirwere chakanyanya chinonzi homozygous achondroplasia (mune mwana anozvarwa akafa kana kufa nguva pfupi mushure mekuzvarwa) uye mukana we50% wekuva neachondroplasia yakajairika.

Kana uchironga kubata pamuviri uye uchida kuziva njodzi yekuti mwana wako ave nechirwere chinogarwa nhaka, chakadai seachondroplasia kana rumwe rudzi rwe dwarfism, taura nachiremba wako nezvekuongororwa kwemajini .

Nzira yekuziva sei dwarfism?

Dzimwe nguva, vanachiremba vanogona kuona skeletal dysplasia mwana asati aberekwa. Panguva yekuzvitakura, vanachiremba vanoshandisa bvunzo dzekuongorora mwana asati aberekwa kuti vaone kana paine zvisina kumira zvakanaka pakukura kwemwana.

Mushure mekunge mwana azvarwa, chiremba anotarisa kukura kwemwana panguva yekushanya kwake gore negore kuchipatara. Kana mwana asina kuoneka pakuzvarwa, kana mwana akasasvika padanho rekukura , chingave chiratidzo chechirwere ichi uye chinogona kuonekwa gare gare. Mimwe miedzo, yakaita seX -rays uye kuongororwa kweropa, inogona kubatsira chiremba kuona kuti sei mwana asiri kukura zvakanaka. Aya ndiwo maitiro anoitwa chirwere ichi.

Ndeapi marapirwo echirwere che dwarfism?

Nekuti hapana mushonga chaiwo we skeletal dysplasia, kurapwa kwakanangana nekudzora zviratidzo, zvakasiyana nemunhu mumwe nemumwe uye kuongororwa kwechirwere.

Kurapa kwekuvhiya kudzora zviratidzo kunogona kusanganisira:

• Kuvhiyiwa kugadzirisa chimiro chemapfupa kana mapfupa ari kukura nenzira isina kujairika.
• Kubvisa mvura yakawandisa yakaungana muuropi (kuvhiyiwa kwehydrocephalus).
• Kuvhiyiwa kuderedza kumanikidzwa kwetsinga yeuropi (chikamu cheuropi chinobatanidza netambo yemusana).
• Kuvhiyiwa kwekubvisa matonsi ne/kana adenoids kuti kufema kuve nyore.
• Kuisa machubhu munzeve kudzivirira hutachiona munzeve.

Mamwe marapirwo asina kuvhiyiwa anosanganisira:

• Kushandisa muchina weCPAP (Continuous Positive Airway Pressure) kurapa sleep apnea .
• Kushandisa zvinhu zvinobatsira kunzwa kuti unzwe zvakanaka.
• Kurudzirai kudya zvine hutano uye kurovedza muviri kudzivirira kufuta kana kufuta (BMI ye30 kana kupfuura).
• Kupa hormone yekukura (kurapwa kwemahormone) semushonga wekushaya mahormone ekukura.
• Muna 2021, US Food and Drug Administration yakabvumidza mushonga weVosoritide (Voxzogo®) kuti ushandiswe kuvana vane makore anopfuura mashanu vane achondroplasia vane mapfupa asati avhara (kureva kuti, kukura kwavo hakusati kwapera). Mukuyedzwa kwekiriniki, mushonga weVosoritide wakabatsira vana kukura nekukurumidza.

Yeuka kuti kurapwa uku kungadiwa kwehupenyu hwese, asi kunogona kuvandudza hupenyu hwemunhu zvakanyanya.

Ndingaderedza sei njodzi yemwana wangu yekuve mupfupi?

Nekuti mamwe marudzi e skeletal dysplasia ane majini, hapana nzira yekudzivirira chirwere ichi kunze kwekunge chiremba aita bvunzo, senge bvunzo dzemajini dzisati dzaiswa . Zvakanaka kubvunza chiremba wako nezve bvunzo dzemajini kuti uzive njodzi chaiyo yemwana wako yekuva nechirwere chemajini chakadai se dwarfism.

Kudya kunovaka muviri kwekukura kwemwanaZvaunotaura zvakakosha zvikuru. Kana uine pamuviri, iva nechokwadi chekuti unodya chikafu chakakwana. Kunyangwe mwana azvarwa, unofanirwa kumupa zvekudya zvakasiyana-siyana zvine hutano zvinoenderana nezera rake, zvakaita semapuroteni, michero, zviyo, nemiriwo. Nenzira iyi, achawana zvese zvinovaka muviri zvaanoda kuti akure.

Chii chaungatarisira kana uine mwana ane hupfupi?

Kunyangwe pasina mushonga chaiwo we skeletal dysplasia, vanhu vazhinji vane hurefu hupfupi vanorarama hupenyu hwakajairwa uye hutano hwakanaka nekurapwa kudzora zviratidzo zvavo. Zvisinei, zvimwe zvezviratidzo zvechirwere ichi zvinogona kunetsa mwana nemhuri, kunyanya kana kukura kwemapfupa kusina kujairika kuchida kuvhiyiwa kakawanda. Chiremba wako achashanda pamwe chete newe nemwana wako kuti vape kurapa kunodiwa nemwana wako kuti ararame hupenyu hwakazara uye hune hutano.

Munhu ane hupfupi anotarisirwa kurarama hupenyu hwakaita sei?

Mumhando zhinji dzechirwere che dwarfism, hupenyu hwenguva dzose hunotarisirwa nekurapwa kudzora zviratidzo. Zvisinei, zvinosuwisa kuti mune dzimwe mhando, hupenyu hwenguva hunogona kupfupikiswa.

Ndingatarisira sei mwana wangu ane skeletal dysplasia?

Pamusoro pekugutsa zvinodiwa nemwana wako panyaya dzekurapa, unogona kutsigira mwana wako nekuita zvinhu zvinotevera, kugadzira mamiriro ezvinhu anofadza kumba uye anomubvumira kutora chikamu mune zvese:

• Kubvisa zvipingamupinyi zvemuviri kumba kuitira kuti mwana agone kushanda ega (semuenzaniso, kuva nechituru, kudzikisa switch yemwenje).
• Kupa rutsigiro rwedzidzo uye/kana rwepfungwa kudzivirira kana kugadzirisa kushungurudzwa nevamwe vana kuchikoro.
• Uyewo, kubatana nemasangano anobatsira vana nekuongorora chirwere ichi.

Sevabereki, tinofanira kubata vana vedu zvichienderana nezera ravo, kwete kureba kwavo. Izvi zvakakosha zvikuru.

Mibvunzo ipi yaunofanira kubvunza chiremba?

Kana mwana wako aine chirwere ichi, unogona kubvunza chiremba mibvunzo yakaita seiyi:

• Kuvhiyiwa kunodiwa here kuti mwana wangu arapwe zviratidzo zvake?
• Ndingabatsira sei mwana wangu kudzivirira hutachiona hwenzeve?
• Pane migumisiro yakaipa pakurapa kwamunokurudzira here?
• Mwana wangu anofanira kutora mahormone ekukura kwenguva yakareba sei?

Pakupedzisira, zvinhu zvekurangarira

Kunyangwe mwana wako akaonekwa aine Skeletal Dysplasia uye achida kuvhiyiwa kana kurapwa kwenguva refu kuti agadzirise zviratidzo, hazvirevi kuti haakwanise kurarama hupenyu hwakazara uye hune chinangwa. Semubereki kana muchengeti, unofanira kubata mwana wako zvichienderana nezera rake, kwete kureba kwake. Izvi zvichabatsira mwana wako kuvaka kuzviremekedza uye kunzwa achigamuchirwa uye achidiwa.

Kana uri munhu mukuru ane dementia, kuva neboka rakanaka rekutsigira, kugadzirisa zviratidzo zvako, uye kurarama hupenyu hune hutano zvinogona kukubatsira kurarama hupenyu hwakazara uye hune simba.

` dwarfism, skeletal dysplasia, mupfupi, dwarfism, mupfupi, kukura kwemapfupa, zvirwere zvemajini