Elidlulileyo Nge-8 kaSeptemba kwakubhiyozelwa uSuku lweHlabathi lweFibrosisi, usuku lolwazi kwesi sifo semfuza, ngenjongo yokugxeka ukungalingani kunyango. Kuqikelelwa ukuba, eSpain, iCystic Fibrosis yenzeka kumntwana omnye kwabangama-1 5.000, kodwa kuthathelwa ingqalelo ukuba umntu omnye kwabangama-35 ngabantu abasithweleyo esi sifo.
Yiyo isifo esinganyangekiyo semvelaphi yemfuza ichaphazela amalungu ahlukeneyos, ingakumbi imiphunga, isibindi kunye nepancreas. Apha sikunika iinkcukacha ezingakumbi ngesi sifo.
Yintoni na, yintoni iimpawu zayo, kwaye ichongwa njani?
Njengoko sinike izimvo kwi ICystic Fibrosis sisifo esinganyangekiyo kunye nelifa lemvelo elinyanisekileyo.. Oku kuthetha ukuba ukuba umntu uzuze njengelifa lomfuziselo ongalunganga kubazali bobabini, uza kufumana isifo. Kodwa ukuba uzuza njengelifa lomfuziselo oqhelekileyo kunye nofuzo olungenasiphene, uya kuba ngumthwali walo, ngaphandle kokubandezeleka kulo, kodwa unethuba lokudlulisela kwinzala yakho.
Njengokuba ichaphazela ukusukela ekuzalweni, kwaye inesithuba esilinganiselweyo sokuphila, ukuxhaphaka kwayo kuphezulu kubantu abancinci. Ingxelo evela kwiCystic Fibrosis Foundation eyenziwe ngo-2014, Uqikelela ixesha lokuphila eliphakathi kwabaguli kwiminyaka engama-39. Ukufakelwa kwemiphunga okanye ukufakelwa kwesibindi phantse kuhlala kufanelekile, kungekudala okanye kamva.
Los iimpawu uphawu Esi sifo sinencasa enetyiwa eluswini, iingxaki zokuphefumla rhoqo, iingxaki zokugaya ukutya kunye nokungabikho kobunzima. Eyona nto ibaluleke kakhulu kwiCystic Fibrosis (CF) yile Ukuchonga kwangoko kuba yandisa ixesha lokuphila lesigulana kwaye iphucula umgangatho kunye nobomi bemihla ngemihla. E-Spain ukufunyanwa kwesi sifo kwenziwa ngovavanyo lwezithende. Ukuba ufuna ukwazi ukuba luquka ntoni olu vavanyo, yabona Oku kubhaliwe.
Unyango lweCF
Ukuba ngaphambi kokuba sitsho Akukho lunyango, kukho amayeza kunye nokuzilolonga okunciphisa iimpawu kunye nokuphucula umgangatho wobomi bezigulana, ngakumbi abantwana. Unyango lusekwe kwiintsika ezintathu ezisisiseko:
- Isondlo esifanelekileyo Kuyimfuneko ukuba uthathe izongezo ze-enzyme yokuncancisa ukufunxwa ngokufanelekileyo kwamafutha kunye namavithamini anyibilikayo.
- Amayeza elwa nosulelo lokuphefumla kunye nokudumba.
- Ukuziqhelanisa rhoqo nonyango lomzimba. Kuyacetyiswa ukuziqhelanisa nemidlalo, ukongeza ekwenzeni i-physiotherapy yokuphefumla yonke imihla ukuphelisa ingqokelela ye-mucus kunye nokugcina ukusebenza kakuhle kwemiphunga.
I-Spanish Federation ye-CF kunye neminye imibutho enqabileyo yezifo, ibanga imfuno yokufikelela kunyango lwamva nje lwesifo kubo bonke abantu abazifunayo, ezinje Orkambi kunye neSymkevi. Omabini la machiza avunyiwe yi-Arhente yamaYeza yaseYurophu (i-EMA) kunye neArhente yaseSpain yamaYeza kunye neMveliso zeMpilo (AEMPS), kodwa abanakho ukufikelela kubantu abaneCystic Fibrosis kuba Icandelo loMphathiswa Wezempilo kunye neVertex Pharmaceuticals elebhu abafikanga kwisivumelwano malunga nexabiso laso. I-Federation iyidlulisele le meko kwi-Ombudsman nakwi-Senate.
IKhomishini yamaZwe ngamaXabiso eziyobisi ivumile ngesicelo semali sokuba ilabhoratri yaseVertex ayisamkeli kwaye izakubeka izityholo kwakhona kwintlanganiso elandelayo ngoSeptemba 30. Ke siza kuva kubo kwakhona, njengoko Ngomhla wamashumi amabini ananye kulenyanga ukubizwa kwezinto ezintsha kuye kwabizwa eMadrid.
ICystic Fibrosis esikolweni
Ukuze ootitshala abaninzi kunye nabafundi babe nolwazi olupheleleyo malunga nesi sifo, ayosuleli kwaphela. Isikhokelo sesikolo sipapashiwe. Ingaba i Unokuzikhuphelela ngqo kwiphepha lomanyano, kwaye injongo yayo kukuba abasebenzi abafundisayo banokunceda ekuqhubeni isikolo, kunye nokudityaniswa kwezentlalo kunye nezemfundo kwaba bafana namantombazana.
Enye yeenkxalabo zabazali xa abantwana besiya esikolweni kukuba ngubani oza kubanika amayeza abo, ukuba bayabavumela baye kwigumbi lokuhlambela xa beceliwe, ukuba baya kubazisa ukuba kukho umntu afunda naye onomkhuhlane okanye ukuba basela ngokwaneleyo. Zonke ezi nkcukacha azikho mncinci kumntwana one-cystic fibrosis.
Olu papasho luxhaswa ngezimali ngenxa yeprojekthi yeSiseko se-ONCE.