Kupisa kunowedzera matambudziko eDravet syndrome, zvichienderana neongororo yeSpain

  • Ongororo yakaitwa neURJC neDravet Syndrome Foundation Spain inoratidza kuti tembiricha yakakwira inowedzera pfari dzemapundu.
  • Vabereki vanotaura kuti kupisa kunowedzera kuwanda, simba, uye nguva yekubatwa nepfari.
  • Kuchinja kwekushisa kamwe kamwe uye kushambira mumadziva emvura zvimwe zvinokonzera.
  • Mhuri dzinoshandisa mbatya dzakareruka, nzvimbo dzinotonhorera, uye mishonga inorwisa hutachiona kuderedza njodzi.

Dravet syndrome

Mhuri dzinogara ne Dravet chirwere Vanoziva zvakanaka kuti Kupisa kunogona kuva muvengi akanyararaIye zvino, ongororo yakaitwa pamwe chete neKing Juan Carlos University neDravet Syndrome Foundation yeSpain inosimbisa izvi neruzivo: tembiricha yepamusoro haingowedzeri kuwanda kwepfari, asiwo inoita kuti dzive dzakanyanya uye dzinogara kwenguva refu.

Tsvagiridzo yemhando yepamusoro yakaunganidza humbowo kubva kuna amai nababa vevana vakabatwa nechirwere ichi kuti vanzwisise kuti mafungu ekupisa anokanganisa sei chirwere ichi chisingawanzoitiki uye chakakomba. Zvakabuda, zvakaburitswa nguva pfupi yadarika, zvinopa ruzivo rwakakosha kune nyanzvi dzehutano. mazano anoenderana nechokwadi chezuva nezuva yemhuri idzi.

Dravet syndrome uye kuongororwa kwekutanga
Chinyorwa chine hukama:
Kukosha kukuru kwekuonekwa kwekutanga kwechirwere cheDravet

Kukanganiswa kwekupisa pazvipfukuto zvepfari

Dravet syndrome

Sekureva kwaDomingo Palacios, muongorori weboka reHum&QRinHS, vabereki vakataura kuti kupisa kwakanyanya uye tembiricha yakakwira Zvirwere zvepfari zvaive zvichiwedzera kuipaHakusi kungove nematambudziko akawanda anowanzoitika, asi rimwe nerimwe rakagara kwenguva yakareba uye raiva rakaoma kudzora. Uyezve, kuchinja kwekushisa kamwe kamwe, kwakadai sekubva munzvimbo ine mhepo inotonhorera kuenda mumugwagwa, uye kusangana nemvura, semuenzaniso, pakushambira mumadziva, kwakashandawo sezvikonzero.

Zvimwe zvinhu zvinokonzera

Dravet syndrome

Vabereki vakataurawo zvimwe zvinhu zvine chekuita nekupisa zvinogona kukonzera matambudziko aya. Semuenzaniso, kushaya mvura mumuviri kana kungova munzvimbo inopisa zvikuru pasina nzira yekudzikamisa hasha. Tsvagiridzo iyi, iyo yakashandisa kubvunzurudzwa kwakadzama nemibvunzo isina mhinduro, yakabvumira mhuri kutaura zvadzinosangana nazvo dzakasununguka pasina kuganhurirwa kune dzimwe sarudzo dzakavharwa, idzo zvakawedzera zvakawanikwa uye zvakapa maonero akazara.

Dravet syndrome
Chinyorwa chine hukama:
Dravet syndrome: chii, zviratidzo, zvinokonzera uye kurapwa

Maitiro emhuri ekugadzirisa matambudziko

Dravet syndrome

Kuti vagadzirise njodzi idzi, vabereki vakagadzira nzira dzakasiyana-siyana dzekugadzirisa kupisa. Izvi zvinosanganisira kupfekedza vana mbatya dzakareruka, kuchengetedza mumba muchitonhorera, kuderedza mabasa ekunze panguva dzinopisa zvikuru, uye, mune dzimwe nguva, kushandisa mishonga yekudzivirira kupisa muviri nekuyedza kuderedza tembiricha yemuviri. Maitiro aya, kunyange zvazvo asingatsigirwi nesainzi nguva dzose, aripo. chibereko chezviitiko zvezuva nezuva uye inogona kushanda sehwaro hwenhungamiro dzekiriniki dzemangwana.

Basa rakaitwa neURJC neDravet Syndrome Foundation yeSpain rinojekesa kuti kupisa chinhu chisingagoni kufuratirwa. Nzira dzakatoshandiswa nemhuri, pamwe chete nehumbowo hwakaunganidzwa, zvinovhura mukana wekuvandudza hupenyu hwevarwere vatobatwa nechirwere ichi. kusimudzira ruzivo nezvekudiwa kwekuenderera mberi nekutsvaga nenzira idzi.


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