Kubatsira vana vane Ehlers-Danlos syndrome vanobudirira uye vanogara vakachengeteka
Vadzidzisi vanogona kuva vashandi vakuru mukuchengetedza mwana wenyu neEhlers-Danlos syndrome akachengeteka uye akabudirira kuchikoro, asi iwe unoda kuve nechokwadi kuti vane ruzivo rwose rwavanoda kuti vabatsire. Ndezvipi zvinhu zvinokosha zvaunofanira kugovana nemudzidzisi wako mwana isati yatanga gore rechikoro?
Kuti zvive zvakanakisisa kunzwisisa kuti vadzidzisi vanofanira kuziva chii pakudzidzisa mwana ane Ehlers-Danlos syndrome zvinobatsira kutanga kutarisa zvigadzirwa zvechimiro uye zviratidzo.
Chii chinonzi Ehlers-Danlos Syndrome (EDS)?
Ehlers-Danlos syndrome (EDS) haisi imwe chirwere, asi pane boka remamiriro ezvinhu anogunzva mavara akabatana akadai seganda, mapfupa, katetila , tendon , mutezi yeropa, nezvimwewo.
Ehlers-Danlos syndrome inzvimbo inoberekerwa nean gene gene mutation mune rimwe remasero gumi nemaviri rinobatanidza mukugadzirwa kwehutano huri mumuviri. Mamwe mafomu ari autosomal anotarisa uye vamwe vanozvidzivirira. EDS inogonawo kubuda nekuda kwekuchinja mutsva kune vanhu vasina mhuri yehutano hwechirwere ichi.
Zvakakosha kuziva kuti pane zviratidzo zvakawanda zvinogona kuitika kuvanhu vane EDS. Vamwe vanhu vanoonekwa kuti vanokurumidza sevana vaduku, asi vamwe havazivi nezvehutano kusvikira vakura. EDS inogona kunge yakanyorova se "joints loose" (iyo inogona kuva "inobatsira" mu gymnastics) kana yakaoma zvakakwana kuti ive kutyisa upenyu.
Zviratidzo zveEhlers-Danlos Syndrome
Zviratidzo zveEhlers-Danlos syndrome zvinogona kusanganisira:
- Mafungiro akawanda anogadziriswa ( pamwe chete hypermobility ): Mumagariro , izvi zvinogona kutumidzwa se "double-jointedness." Nokuda kwehuwandu hwehutachiona, kushandiswa kwemavara kunowanzoitika.
- Ganda rakadzika rinogona kuva rakanyorova kana velvet-kufanana muhutu.
- Kusuruvara ganda: Ganda rinogona kubvarura nyore nyore uye kazhinji zvakaoma kuputika (kumira). Kushambidzika kunowanzoita kuti pave nechirwere.
Marudzi eEhlers-Danlos Syndrome
Pane mazana matanhatu mazana ehlers-Danlos syndrome, uye mamwe eaya akaparara zvakare zvakare mune zvakasiyana siyana zve syndromes. Subtype inonyanyozivikanwa ye EDS ndeyekushaya simba, uye inonyanya kubata mazamu. Zvimwe zvinotyisa zvakanyanya zvinosanganisira chirwere che "vascular" umo mitsipa yeropa inogona kubvarura, dzimwe nguva nemigumisiro yakaipa. Nenzira yakanaka, izvi zvakasiyana-siyana zvakanyanya hazvisi zvishoma. Nepo kuora nyore nyore kunowanzoonekwa mune vascular subtypes, zvinogona kuitika nemhando ipi neipi ye EDS.
Zvinhu Vadzidzisi Vanofanira Kuziva
Pane zvinhu zvakakosha zvinokosha izvo vadzidzisi vanofanira kuziva kuti vabatsire mwana ane Ehlers-Danlos syndrome kugara wakachengeteka uye kubudirira. Tichazotaura pamusoro pehumwe huwandu hukuru kana iwe une mwana ane EDS mukirasi yako, asi zvakakosha kugara pasi nevabereki vemwana uye kudzidza nezvezvinetso zvavo. Mwana mumwe nomumwe ane EDS akasiyana, uye vabereki vanogona kunge vane hanya nezvinhu zvisina kutaurwa munharaunda yakawanda pamusoro pesarudzo. Chii chaunofanira kuziva pamusoro pevana vane EDS?
Zvimwe Zvimwe Zvepanyama Zvinogona Kuva Nengozi
Zvinhu zvepanyama zvinogona kuva nengozi nekuda kwehuviri hwehutachiona uye ganda rakaoma. Zvimwe zviito zvemuviri zvinofanirwa kudziviswa sezvinobatanidzwa zvisingatauri zvinogona kuisa vana ava panjodzi yekuregererwa.
Mabasa anowanzoita kuti kubudiswa kunosanganisira kushamwaridzana nemitambo uye izvo zvinokonzera kukurumidza kufuratira kana kukotama, zvakadai semasikirwo emitambo. Kunyange mukati memutsara we EDS, kuoma kwezviratidzo kunowirirana, saka zvinobatsira kubvunza vabereki vemwana nezvezvinhu zvakasiyana siyana zvingangosangana nazvo mumitambo yekudzidzira kana panzvimbo yekutamba.
Kunyora Kunogona Kuoma
Dzimwe nguva zviri nyore kukanganwa kuti mabasa akanaka-motokari anogona kunge akaoma sekuita muviri wose. Kunyora, kunyanya, kunogona kuva kwakaoma kune vana vane EDS. Dambudziko iri rekurwadziwa nekushandisa peni kana penzura, zvakare, zvinokonzera kukwanisa kwekwanisi kutora manotsi, kunyora zvinyorwa, kana kuti kuramba uchikurumidza kuedzwa.
Kune zvinhu zvakawanda izvo vadzidzisi vanogona kuita kubatsira vana vari kurwisana nekanza uye kurwadziwa kwemaoko nekuda kwekunyora. Dzimwe nguva zvinogona kunge zviri nyore sekuwedzera peni. Kune vamwe vana, kuverenga pamabhuku kana iPad kunogona kuva nyore pane kunyora. Imwe nzira inobatsira vamwe vana ndeyokupa nyota-vatora; zvimwe mudzidzi anoda kutora manotsi kana manotsi iwe iwe semudzidzisi anogona kupa.
Rudzi rwekunyora runogona kuitawo kusiyana, uye dzimwe nguva kushandura kana kuronga kuri nyore. Kuchinja nekupfuura pakati peizvi, zvisinei, zvinogona kupa chinetso.
Chinonyanya kukosha, zvichida, kubvumira mwana kuwedzerwa nguva yakawanda yekunyora paanenge achiedza miedzo kana kupedzisa mu-chikoro chekuchikoro.
Kuramba Uchitadza Kuzoitika
Vana vane EDS kazhinji vanowanzove vasipo, zvichida nemhaka yekurwadziwa kusingaperi, kukuvadzwa, kana kuneta kunowanzozara. Kuvhiringidzika kwepabonde rekurara kunowanzozara , zvinokanganisa chikamu chetatu chevana vane EDS, uye kana kusatorwa kunogona kukonzera kukanganisa kwezuva masikati. Zvinobatsira chaizvo kushanda nevabereki vemwana kuti arambe achienda pane zvaanenge achiri kuita pamba.
Kuvhiringidza uye Ganda Misodzi Inowanika
Munharaunda yatinenge tava kunyanya kutarisana nayo inogona kuvapo nekushungurudzwa kwevana, zvakakosha kunzwisisa kuti matambudziko uye ganda remisodzi zvinowanzoonekwa kune vana vane EDS. Kana uine mwana mukirasi uye wakanzwa uchinetseka nekuona matambudziko kana ganda remisodzi, gara uchiyeuka kuti chii chingave chiri mumwana asina EDS chinogona kuva chimiro mumwana ane EDS.
Mabhuku Akaoma
Dambudziko rakafanana revana vane EDS riri kutakura mabhuku akaremera uye kubva kuchikoro. Mabhuku anorema! Pane mishonga yakawanda inogona kubatsira neizvi. Dzimwe nguva, kugovera mwana necheti yemabhuku kuti arambe ari pamusha pamwe nekugadzirisa kuchikoro kunogona kuderedza kushushikana. Kana zvakakosha kuti mwana atakure mabhuku pakati pekirasi, unogona kupa mwana wacho shamwari kuti abatsire. Kushandisa shanduro yepaIndaneti yeimwe bhuku ndeimwe nzira.
Kurukura Kuziva Nevamwe Vadzidzi
Vana vane ruzivo uye vanowanzova nemibvunzo pamusoro pemudzidzi uyo asingakwanisi kutora mimwe mabasa kana kuti anoda rubatsiro runokosha (sekuita nguva yakawanda yekupedzisa muedzo). Usati wataura kune vamwe vadzidzi, iva nechokwadi chekubvunza vabereki vako kuti chii chavanonyatsokurukura newe. Vabereki vakawanda vanokoshesa chiito chekuunza vana vaanodzidza navo kuchikoro nokukurumidza chero bedzi zvichiitwa nenzira yakakodzera uye iri nyore. Kumbira mwana pamwe chete zvaanoda. Vamwe vana havadi kuti vamwe vana vazive kuti "vakasiyana" uye zvakakosha kuremekedza izvozvo. Dzimwe vana, zvakasiyana, zvinogona kusunungurwa kana iwe uchirega vamwe vana vachiziva zvavari kutarisana nayo.
Iva Nehanya Nezvinodiwa Zvepfungwa Zvemwana
EDS inogona kukonzera kushungurudzika kukuru mupfungwa kune vana, uye kukanganisa kuchikoro kunogona kuwedzera pakutambudzika uku. Taura nevabereki vemwana pamusoro pezvimwe zvinonetsa zvavari. Apo mwana ane EDS akasiyiwa kubva pane chimwe chinhu, funga nezvenzira dzekutora mararamiro ehupenyu hwechiitiko ichi nechimwe chinhu. Kumbira chii chakabatsira mwana kunzwa kuti anoshanda uye chikamu cheboka kunze kwekirasi.
Vhura Kutaurirana Kunokosha
Kuzarura kukurukurirana pakati pemusha nechikoro kunokosha zvikuru kune mwana ane EDS. Vana ava vanoda vanhu vose vakuru muupenyu hwavo kushanda pamwechete. Kana uine mibvunzo kana kusava nechokwadi, nguva dzose zvakanaka kukumbira.
Shoko Rinobva
Ehlers-Danlos syndrome inoratidzika mamiriro ezvinhu anosanganisira hypermobility (masangano asina kusununguka), ganda rakaoma, uye dzimwe nguva mamwe matambudziko. Kana iwe uchange uine mwana neDDS muchikoro, zvakakosha kushanda pamwe chete nevabereki vake kuti vawane nzira dzekumubatsira kuti zvose zvibudirire uye zvakachengeteka. Nenzira, zviyero zvakajeka zvakadai sekudzivisa kutarisana nemitambo, kupa nguva yakawanda apo kunyora kunorwadza, uye kubatsira mwana kuramba achidzidza pane zvaasina, anogona kuenda munzira yakareba kuti ave nechokwadi chekuchengeteka uye kubudirira kuchikoro.
Semashoko ekupedzisira, kana iwe uchicherechedza kuti mwana mukirasi yako anoita kunge ane hypermobility uye ane chimwe chezvinhu zvinotaurwa pakutanga, taura nevabereki vemwana. EDS inofungidzirwa kuti inokanganisa vanhu 50 000 muUnited States, uye 90 muzana yevanhu ava vanoenda vasina kuwanikwa kusvikira vaine chirwere chekurapa chinotarisirwa chinoda kutarisirwa.
> Sources:
> De Baets, S., Vanhalst, M., Coussens, M. et al. Kufuridzirwa kweEhlers-Danlos Syndrome-Hypermobility Type, pane Amai: A Phenomenological Hermeneutical Study. Tsvakurudzo pamusoro Pokukudzivirira Kwekuvandudza . 2017. 60: 135-144.
> Kliegman, Robert M., Bonita Stanton, St Geme III Joseph W., Nina Felice. Schor, Richard E. Behrman, uye Waldo E. Nelson. Nelson Nhamba yeBhuku rePediatrics. 20th Edition. Philadelphia, PA: Elsevier, 2015. Print.