Zvakaitika Nyamavhuvhu 8 yaipembererwa Zuva reCystic Fibrosis Zuva, zuva reruzivo nezvechirwere ichi, kuitira kushora kusaenzana mukurapwa. Inofungidzirwa kuti, kuSpain, Cystic Fibrosis inoitika mune mumwechete pavanhu zviuru zvishanu vanozvarwa, asi zvinofungidzirwa kuti munhu pavanhu makumi matatu nevatatu vatakuri vane hutano hwechirwere ichi.
Ichi ndicho chirwere chisingaperi chemajini inobata nhengo dzakasiyanas, kunyanya mapapu, chiropa uye rwatata. Pano tinokupa rumwe ruzivo nezve chirwere ichi.
Chii icho, ndezvipi zviratidzo uye inoonekwa sei?
Sezvo isu takurukura iyo Cystic Fibrosis chirwere chisingaperi uye chinogarwa nhaka cheiyo autosomal recessive hunhu.. Izvi zvinoreva kuti kana munhu iwe unotora nhaka yakakanganisika geni kubva kuvabereki vaviri, iwe uchawana chirwere. Asi kana iwe ukagara nhaka zvakajairika geni uye rakaremara jeni, unenge uri mutakuri waro, pasina kutambura naro, asi uine mukana wekutapurira kune vana vako.
Sezvo inobata kubva pakuzvarwa, uye iine hushoma hwekutarisira hupenyu, kuwanda kwayo kwakakwirira kune vechidiki. Chirevo kubva kuCystic Fibrosis Foundation chakaitwa mu2014, inofungidzira avhareji tarisiro yeupenyu yevarwere pamakore makumi matatu nemasere. Lung kana chiropa kupinza chinenge chinenge nguva dzose chinodiwa, munguva pfupi kana inotevera.
ari hunhu zviratidzo Wechirwere ichi pane munyu kuravira kweganda, kazhinji kufema matambudziko, kugaya matambudziko uye kushaya huremu Chinhu chakanyanya kukosha muCystic Fibrosis (CF) ndeye kuongorora kwekutanga nekuti inowedzera hurefu hwehupenyu hwemurwere uye inovandudza hunhu hwavo uye hupenyu hwezuva nezuva. MuSpain kuwanikwa kweiyi pathology kunoitwa kuburikidza nesheel test. Kana iwe uchida kuziva kuti uyu muedzo unosanganisira chii, ona chinyorwa ichi.
Kurapa kweCF
Kana tisati tataura izvozvo Iko hakuna kurapwa, kune mishonga uye kurovedza muviri kunoderedza zviratidzo uye nekuvandudza hupenyu hwevarwere, kunyanya vana. Kurapa kwakavakirwa pambiru nhatu dzakakosha:
- Chikafu chakakodzera Izvo zvinodikanwa kuti utore pancreatic enzyme zvinowedzerwa kuitira kunyatsotora kwakaringana kwemafuta uye ane mafuta-akanyungudika mavhitamini.
- Mishonga iyo inorwisa kufema hutachiona uye kuzvimba.
- Kugara uchidzidzira kurapwa kwepanyama. Zvinokurudzirwa kudzidzira mitambo, kuwedzera pakuita yekufema physiotherapy zuva nezuva kubvisa kuwanda kwemamousu uye kuchengetedza zvakakwana mapapu mashandiro.
Sangano reSpain Federation reCF pamwe nemamwe masangano asingawanzo kurwara, vanoti kuda kwekuwana marapiro echirwere chevanhu vese vanozvida, senge Orkambi naSymkevi. Mishonga iyi miviri inogamuchirwa neEuropean Medicines Agency (EMA) uye neSpanish Agency yeMishonga neMishonga Hutano (AEMPS), asi havakwanise kusvika kuvanhu vaneCystic Fibrosis nekuti bazi rezvehutano pamwe neVertex Pharmaceuticals laboratory havana kusvika chibvumirano maererano nemutengo wayo. Iyo Federation yaendesa mamiriro aya kuna Ombudsman neSeneti.
Interministerial Commission pamusoro peMitengo yeMishonga yakabvumirana pachirongwa chekubhadhara mari chekuti Vertex murabhoritari haigamuchire uye ichapa zvichemo zvakare kumusangano unotevera waGunyana 30. Saka tichazonzwa kubva kwavari zvakare, sa musi wa21 wemwedzi uno mafoni matsva akadaidzwa kuMadrid.
Cystic Fibrosis kuchikoro
Zvekuti vazhinji vadzidzisi nevadzidzi vane ruzivo rwakakwana nezvechirwere ichi, icho haina kutapuriranwa zvachose, gwaro rechikoro rakaburitswa. Ndiyo unogona kurodha pasi zvakananga kubva ku federation peji, uye chinangwa chayo ndechekuti vashandi vekudzidzisa vanogona kubatsira mashandiro echikoro, uye kusangana munharaunda uye munharaunda kwevakomana nevasikana.
Chimwe chinonetsa vabereki kana vana vaenda kuchikoro ndechekuti ndiani achavapa mishonga yavo, kana vachivarega vachienda kuchimbuzi pavanokumbirwa, kana vakavazivisa kuti kune wavanodzidza naye ane dzihwa kana kana vakanwa zvakakwana. Zvese izvi zvese hazvisi zvidiki kune mwana ane cystic fibrosis.
Iri bhuku rinotsigirwa nemari nekuda kwechirongwa cheOYECE Foundation.