65 iRose kunye nokuchaza iCystic Fibrosis kubantwana
Yintoni "i-Roses 65"?
Igama elithi "roses 65" ligama le- cystic fibrosis (CF). I-Cystic fibrosis yimizimba yezofuzo ebangela ukuba i-digestive fluids, i-sweat, kunye ne- muscus ibe yinyani kunye ne-sticky-blocking airways, imihlathi yokutya kunye nezinye iidonki kuwo wonke umzimba. Ngenxa yokuvalwa kwe-CF, lesi sifo siphelela ekufeni.
Namhlanje, ngenxa yophando kunye nophuhliso lwezokwelapha, abaninzi abantu abaneCF bahlala kakuhle kwiminyaka yabo yesithathu kwaye izinga lokusasazeka ngo-2016 lalingama-37 ubudala.
Kwiminyaka emashumi edlulileyo, nangona kunjalo-phambi kobuchwephesha obubuchwepheshe esinalo namhlanje-ukulindeleka kobomi kulabo abane-CF abazange baqhubeke beselula.
Ibali emva kwekota "65 iRose"
Igama elithi "roses 65" lahlanganiswa ngasekupheleni kwawo-1960, nguRichard (Ricky) Weiss oneminyaka emine ubudala kunye ne-cystic fibrosis. Unina wentombazana, uMary G. Weiss, waba yivolontiya kwiCystic Fibrosis Foundation ngo-1965 emva kokufunda ukuba bonke oonyana bakhe abathathu babe neCF. Ukuncedisa ukukhulisa inkxaso yesi sifo, u-Weiss wenza umnxeba ukuba aqoke inkxaso kwiCF yophando. Ungazi ukuba u-Weiss, uRicky wayekufuphi, ephulaphule kwiifowuni zakhe.
Ngelinye ilanga, uRicky, oneminyaka emine ubudala, wabhekana nonina waza wamxelela ukuba wayeyazi malunga nokubiza kwakhe. Unina wamangaliswa, kuba wayeyigcina yonke into efihlakeleyo kubantwana bakhe. Udidekile, uiss wacela uRicky ukuba wayecinga ukuba iifowuni zibiza ntoni. Waphendula wathi, "Usebenza i-Roses ezingama-65."
Akudingeki ukuba athi, unina wayeshukunyiswa ngokungathandabuzekiyo ngokunyanisekileyo kwe-cystic fibrosis, njengoko kunabantu abaninzi ukususela ngaloo mini.
Kulo suku, igama elithi "Roses" lisetyenziswe ngukunceda abantwana babeke igama kwiimeko zabo. Ibinzana liye labe liphawu lokuthengisa elibhalisiweyo leCystic Fibrosis Foundation, eyamkela i-rose njengesimboli sayo.
Usiss Family Today
URichard Weiss wafa ngenxa yeengxaki ezinxulumene neCF ngo-2014. Uhlala esaphila ngabazali bakhe uMary noHarry, umkakhe, uLisa, inja yabo, uKeppie kunye nomntakwabo u-Anthony. Intsapho yakhe ihlala izinikezele ukufumana unyango lwe-cystic fibrosis.
Malunga neCystic Fibrosis Foundation
I-Cystic Fibrosis Foundation (eyaziwa ngokuba yi-CF Foundation) yasungulwa ngo-1955. Xa kusekwa isiseko, abantwana abazalwa nge-cystic fibrosis babengalindelekanga ukuba bahlale ixesha elide ukuya esikolweni sokuqala. Siyabulela kwimigudu yeentsapho ezinjengeentsapho ze-Weiss, imali yaphakanyiswa ukuze ixhase uphando ukuze ifunde kabanzi malunga nale sifo esingaqondanga kakuhle. Ngeminyaka engama-7 yesiseko sokuqala, iminyaka yobudala yokusinda ikhuphukela kwiminyaka eyi-10, kwaye iqhubekile ukunyuka ukusuka kwangoko.
Ngexesha, isiseko saqala ukuxhasa uphando nophuhliso lwezilwanyana ezithile kunye nezokwelapha. Phantse zonke izidakamizwa ezisemthethweni ze -FDA ezivunyiweyo ze-cystic fibrosis ezikhoyo namhlanje zenzeke inxalenye ngenxa yokuxhasa isiseko.
Namhlanje, iCF Foundation isekela uphando oluqhubekayo, linikela ngononophelo ngamaziko okunakekelwa kweCF kunye neenkqubo ezinxulumeneyo, kwaye inikezela izibonelelo kubantu abaneCF kunye neentsapho zabo.
Ukuqaphela ukuxilongwa phambi kokuba iimpawu zivele zivumele ukuba abantwana abaninzi abaneCF bafumane unyango
Ukuhlolwa kweCystic Fibrosis kunye nabathwali
Ukuphuculwa okwenziwe kungekuphela kwonyango lwe-cystic fibrosis, kodwa ukukwazi kwethu ukufumanisa eso sifo kusenokwenzeka kwaye sifumanise ukuba ngaba abazali bayenzeka ukuba baphathe imfuza.
Ukuvavanya i-Genetic ngoku kufumaneka ukuba ungomnye wabantu abayizigidi ezili-10 e-United States abaphethe i-CF Trait-uguquko kwi- CFTR gene .
Ukuhlolwa kwintsana ye-cystic fibrosis kuyenziwa kumazwe amaninzi, kwaye iyakwazi ukubona ukuba i-gene iyakho kwaye ikhokelela ekuqhubekeni kovavanyo.
Ngaphambi kokuvavanywa kwesi sifo sasingathotywanga sifumaneka ukuba ivele impawu, kubandakanywa ukukhula okulibazisekile kunye neengxaki zokuphefumula. Ngoku, nangaphambi kokuba isifo sibonakale, unyango luyaqala.
UkuCelwa kweCystic Fibrosis
Ukuba uhanjiswe ukujoyina iinzame zentsapho ye-Weiss ekwenzeni umehluko kulabo abane-cystic fibrosis, funda ngakumbi malunga nokuba ngummeli. Ukufumana ingcamango engcono ngokuqala malunga nokutshintsha okukhulu okwenziwe kubomi balabo abaphila nesifo. khangela abantu abadumileyo nge-cystic fibrosis , kwaye beye, kunye nomzekelo wethemba.
Imithombo:
Foundation Cystic Fibrosis. I-Roses Story. https://www.cff.org/About-Us/About-the-Cystic-Fibrosis-Siseko /The-65-Roses-Story/
ILayibrari yeSizwe ka-US yamayeza. Medline Plus. Icystic fibrosis. Ukuhlaziywa 02/15/16. https://medlineplus.gov/ency/article/000107.htm