I-Roses nokuchaza i-Cystic Fibrosis kuya kwezingane
Iyini "ama-Roses angu-65?"
Igama elithi "roses 65" liyisidlaliso se- cystic fibrosis (CF). I-cystic fibrosis yisimo sezakhi zofuzo esibangela ukushisa kwamanzi okugaya, ukujula, kanye ne- mucus ukuze kube mnandi futhi kube ne-sticky-blocking up airways, imigqa yokugaya, kanye namanye amathanga emzimbeni wonke. Ngenxa yezingcingo ezibangelwa i-CF, lesi sifo siphelela ekufeni.
Namuhla, ngenxa yokucwaninga nokuthuthuka kwezokwelapha, abantu abaningi abane-CF baphila kahle emashumini abo amathathu kanti isilinganiso sokusinda isilinganiso ngo-2016 sasineminyaka engu-37 ubudala.
Eminyakeni eyizinkulungwane ezedlule, noma kunjalo-ngaphambi kobuchwepheshe obuphambili esinawo namhlanje-ukulindela ukuphila kwalabo abane-CF abazange bafinyelele eminyakeni ebusana.
Indaba Ebude Ngesikhathi "I-Roses"
Igama elithi "ama-roses angu-65" lahlanganiswa ngasekupheleni kwawo-1960, nguRichard (Ricky) Weiss oneminyaka engu-4 ubudala onama-cystic fibrosis. Unina womfana, uMary G. Weiss, waba isisebenzi sokuzithandela seCystic Fibrosis Foundation ngo-1965 ngemva kokufunda ukuthi amadodana akhe amathathu ayenayo iCF. Ukuze kusize ukukhulisa izimali zesifo, u-Weiss wenza izingcingo ukuba abuthe ukwesekwa kocwaningo lweCF. U-Weiss engazi lutho, wayesekude, elalele izingcingo zakhe.
Ngolunye usuku, uRicky, oneminyaka emine ubudala, wabhekana nomama wakhe wamtshela ukuthi uyazi mayelana nokubiza kwakhe. Umama wakhe wamangala, ngoba wayelokhu egcina ulwazi olwalutholakala kumadodana akhe. Udidekile, u-Weiss wabuza uRicky ukuthi ucabangani ukuthi ucingo lukhuluma ngani. Wamphendula wathi, "Usebenza ama-Roses angu-65."
Akungabazeki ukuthi, unina wayethinteka kakhulu ngokungaqondile kwakhe nge-cystic fibrosis, njengoba kunabantu abaningi kusukela ngalolo suku.
Kuze kube yilolu suku, igama elithi "Roses 65" lisetshenziswe ngokusiza izingane zibeke igama esimweni sabo. Le nkulumo isuke ibe uphawu lokuhweba olubhalisiwe lweCystic Fibrosis Foundation, olwamukela i-rose njengesibonakaliso salo.
I-Weiss Family Today
URichard Weiss wabulawa ngezinkinga ezihlobene no-CF ngo-2014. Usinda abazali bakhe uMary noHarry, umkakhe, uLisa, inja yabo, uKeppie nomfowabo u-Anthony. Umndeni wakhe uhlala uzinikele ekutholeni ukwelashwa kwe-cystic fibrosis.
Mayelana neCystic Fibrosis Foundation
I-Cystic Fibrosis Foundation (eyaziwa nangokuthi i-CF Foundation) yasungulwa ngo-1955. Lapho isisekelo sakhiwa, abantwana abazalwa nge-cystic fibrosis babengalindelekile ukuba baphile isikhathi eside ngokwanele ukuya esikoleni sokuqala. Ngenxa yemizamo yemindeni enjengekhaya lika-Weiss, imali yakhuliswa ukuze ixhase ucwaningo ukuze ifunde kabanzi ngalesi sifo esingaqondakali. Kungakapheli iminyaka eyisikhombisa kokuqala kwesisekelo, iminyaka yobudala yokuphila yakhuphukela eneminyaka eyi-10, futhi iqhubekile ukwandisa kusukela ngaleso sikhathi.
Ngokuhamba kwesikhathi, isisekelo saqala ukusekela ucwaningo nokuthuthukiswa kwezidakamizwa ezithile kanye nezindlela zokwelapha. Cishe zonke izidakamizwa ezigunyaziwe ze-FDA ezibizwa ngokuthi i-cystic fibrosis etholakalayo namuhla zenziwa ingxenye ngenxa yokusekelwa kwesisekelo.
Namuhla, i-CF Foundation isekela ucwaningo oluqhubekayo, lunikeza ukunakekelwa ngezikhungo zokunakekelwa kwe-CF nezinhlelo zokubambisana, futhi inikeza izinsiza kubantu abane-CF nemindeni yabo.
Ukuqaphela ukuxilongwa ngisho nangaphambi kokuba izimpawu zivele zivumele izingane eziningi nge-CF ukuthi zithole ukwelashwa
Ukuhlolwa kwe-Cystic Fibrosis ne-Carriers
Izithuthukisi zenzelwe ukwelashwa kwe-cystic fibrosis kuphela, kepha ikhono lethu lokuthola lesi sifo kusenesikhathi futhi ngisho nokuthola ukuthi abazali bayenzeka ukuthwala isakhi.
Ukuhlolwa kwe-Genetic manje kuyatholakala ukuthola ukuthi ungomunye wabantu abayizigidi ezingu-10 e-United States abaphethe i-CF Trait-ukuguqulwa kwesakhi se- CFTR .
Ukuhlolwa okusanda kuzalwa kwe-cystic fibrosis kwenziwa emazweni amaningi, futhi kungabona ukuthi kungenzeka ukuthi igciwane likhona futhi liholele ekuhloleni okuqhubekayo.
Ngaphambi kwalokhu ukuhlolwa lesi sifo kwakungavamile ukutholakala kuze kutholakale izimpawu, kubandakanya ukukhula okubambezelekile nezinkinga zokuphefumula. Manje, ngisho nangaphambi kokuba lesi sifo sibonakale, ukwelashwa kungaqala.
Ukwakhiwa kweCystic Fibrosis
Uma ushukumiseleka ukuba ujoyine imizamo yomndeni ka-Weiss ekwenzeni umehluko kulabo abane-cystic fibrosis, funda kabanzi ngokuba ummeli. Ukuthola umqondo ongcono kuqala mayelana noshintsho olukhulu lokubaluleka olwenziwe empilweni yalabo abaphila nalesi sifo. hlola laba bantu abadumile nge-cystic fibrosis , futhi bebekhona, nesibonelo sethemba.
Imithombo:
I-Cystic Fibrosis Foundation. I-Roses Story engu-65. https://www.cff.org/About-Us/About-the-Cystic-Fibrosis-Foundation/The-65-Roses-Story/
Ilabhulali Kazwelonke Yezokwelapha yase-US. I-Medline Plus. I-Cystic Fibrosis. Kubuyekezwe 02/15/16. https://medlineplus.gov/ency/article/000107.htm