65 Roses ndi Kufotokoza Cystic Fibrosis kwa Ana
Kodi "Roses 65" ndi chiyani?
Mawu oti "roses 65" amatchulidwa kuti cystic fibrosis (CF). Cystic fibrosis ndi matenda omwe amachititsa kuti madzi a minofu, thukuta, ndi ntchentche zikhale zamtundu wakuda komanso zotsekemera. Chifukwa cha ziphuphu zomwe zimayambitsa CF, matendawa amatha kufa.
Masiku ano, chifukwa cha kafukufuku ndi kupita patsogolo kwa zamankhwala, anthu ambiri omwe ali ndi CF amakhala moyo wawonthu m'zaka makumi atatu ndipo chiwerengero cha moyo wawo mu 2016 chinali ndi zaka 37.
Zaka makumi angapo zapitazo, komabe, tisanakhale ndi zipangizo zamakono zomwe tili nazo lerolino, chiyembekezo cha moyo kwa anthu omwe ali ndi CF sichinapitirire msinkhu wawo.
Nkhani Pambuyo pa Nthawi Yake "Roses 65"
Mawu akuti "roses 65" anapangidwa kumapeto kwa m'ma 1960, ndi Richard (Ricky) Weiss wazaka zinayi ndi cystic fibrosis. Mayi wa anyamata, Mary G. Weiss, adadzipereka ku Cystic Fibrosis Foundation mu 1965 ataphunzira kuti ana ake onse atatu anali ndi CF. Pofuna kuthandizira ndalama za matendawa, Weiss adaimbira foni kuti athandizidwe ndi kafukufuku wa CF. Weiss sanadziwe, Ricky anali pafupi, akumvetsera pa kuyitana kwake.
Tsiku lina, Ricky, wa zaka zinayi, anakumana ndi amayi ake ndipo anamuuza kuti amadziwa za kuyitana kwake. Amayi ake adadabwa, chifukwa adasunga chidziwitso cha chikhalidwe chobisika kwa ana ake. Atasokonezeka, Weiss anafunsa Ricky zomwe ankaganiza kuti foniyo inali. Iye anamuyankha iye, "Iwe ukugwira ntchito Roses 65."
Mosakayikira, amayi ake adasunthidwa modabwitsa ndi mawu ake osayamika a cystic fibrosis, monga momwe alili anthu ambiri kuyambira tsiku limenelo.
Mpaka lero, mawu akuti "Roses 65" agwiritsidwa ntchito powathandiza ana kuika dzina pa chikhalidwe chawo. Mawuwa asanduka chizindikiro cha Cystic Fibrosis Foundation, chomwe chinapangitsa kuti maluwawo akhale chizindikiro.
The Weiss Family Today
Richard Weiss anamwalira chifukwa cha zovuta zokhudzana ndi CF mu 2014. Iye akukhalabe ndi makolo ake Mary ndi Harry, mkazi wake Lisa, galu wawo, Keppie, ndi mchimwene wake Anthony. Banja lake likupitirizabe kudzipatulira kupeza chithandizo cha cystic fibrosis.
Pafupi ndi Cystic Fibrosis Foundation
Cystic Fibrosis Foundation (yomwe imadziwikanso kuti CF Foundation) inakhazikitsidwa mu 1955. Pamene maziko adakhazikitsidwa, ana obadwa ndi cystic fibrosis sanayembekezere kukhala moyo wokwanira kuti apite ku sukulu ya pulayimale. Chifukwa cha khama la mabanja monga banja la Weiss, ndalama zinakulira kuti zipereke ndalama zowonjezera kuti ziphunzire zambiri za matenda osadziwika bwino. M'zaka zisanu ndi ziwiri za chiyambi cha maziko, zaka zapakatikati za moyo zidakwera kufika zaka khumi, ndipo zakhala zikuchulukirapo kuyambira pamenepo.
Patsogolo pake, mazikowo adayamba kuthandizira kufufuza ndi chitukuko cha mankhwala ndi mankhwala oyenera a CF. Pafupi ndi mankhwala onse a FDA omwe amavomereza mankhwala a cystic fibrosis omwe alipo lerolino amapangidwa chifukwa chothandizidwa ndi maziko.
Masiku ano, CF Foundation imapitiriza kufufuza, imapereka chisamaliro kudzera muzipatala za CF ndi mapulogalamu ogwirizana, ndipo zimapereka chuma kwa anthu omwe ali ndi CF ndi mabanja awo.
Kuzindikira za matendawa ngakhale zizindikiro zisanawonekere zathandiza ana ambiri ndi CF kuti alandire chithandizo
Kuwunika kwa Cystic Fibrosis ndi Carriers
Zopititsa patsogolo sizinapangidwe kokha pa chithandizo cha cystic fibrosis, koma timatha kuyesa matendawa mwamsanga komanso kudziwa ngati makolo amanyamula jini.
Kuyezetsa magazi kumapezeka tsopano kuti mudziwe ngati ndinu mmodzi mwa anthu 10 miliyoni ku United States omwe amanyamula CF Trait-kusintha kwa gene CFTR .
Kuwonetseredwa kwa khanda kwa cystic fibrosis kumachitika m'mayiko ambiri, ndipo kumatha kudziwa kuti palibenso jini ndipo imayambitsa kuyesedwa.
Izi zisanachitike, matendawa sanawoneke mpaka zizindikiro zikuwonekera, kuphatikizapo kukula kwa kuchepa ndi mavuto otha kupuma. Tsopano, ngakhale matendawa asanamveke, mankhwala angayambe.
Cystic Fibrosis Advocacy
Ngati mwasunthira kulowa nawo banja la Weiss potengera kusiyana kwa omwe ali ndi cystic fibrosis, phunzirani zambiri za kukhala woimira. Kuti tipeze malingaliro abwino choyamba pokhudzana ndi kusintha kwakukulu komwe kwakhudza miyoyo ya anthu omwe ali ndi matendawa. onani anthu otchukawa ndi cystic fibrosis omwe ali, ndipo akhala, ndi chitsanzo cha chiyembekezo.
Zotsatira:
Cystic Fibrosis Foundation. Mbiri ya Roses 65. https://www.cff.org/About-Us/About-the-Cystic-Fibrosis-Foundation/The-65-Roses-Story/
Laibulale ya National National Medicine. Medline Plus. Cystic Fibrosis. Kusinthidwa 02/15/16. https://medlineplus.gov/ency/article/000107.htm