65 Rawoki da Bayyana Cystic Fibrosis ga Yara
Mene ne "65 Roses?"
Kalmar "65 wardi" shine sunan lakabi ga cystic fibrosis (CF). Cystic fibrosis shine yanayin kwayoyin da ke haifar da ruwa mai narkewa, gumi, da ƙuduri don zama tsantsa da tsalle-tsalle masu hanzari, hanyoyi masu narkewa, da sauran tsokoki cikin jiki. Saboda matsalolin da CF ke haifarwa, cutar ta kasance mummunan rauni.
A yau, godiya ga bincike da ci gaba a magani, mutane da yawa da ke zaune tare da CF suna da kyau a cikin shekaru talatin da kuma yawan rayuwarsu a shekarar 2016 yana da shekaru 37.
Shekaru da suka gabata, duk da haka-kafin fasahar da muka samu a yau-rayuwar rayuwa ga wadanda ke tare da CF ba su kara tuntube ba.
Labarin baya bayan lokaci "65 Roses"
An rubuta kalmar "65 wardi" a cikin ƙarshen shekarun 1960, da Richard (Ricky) Weiss mai shekaru hudu da cystic fibrosis. Mahaifiyar yarinyar, Mary G. Weiss, ta zama mai ba da gudummawa ga Foundation Cystic Fibrosis a 1965 bayan ya koyi cewa dukan 'ya'yanta maza guda uku suna da CF. Don taimakawa wajen tayar da kuɗi don cutar, Weiss ya kira kiran waya don tattara goyon baya ga bincike na CF. Unbeknownst ga Weiss, Ricky yana kusa, sauraron ta kira.
Wata rana, Ricky, mai shekaru hudu, ya fuskanci mahaifiyarsa ya gaya masa cewa ya san game da kira. Mahaifiyarsa ta yi mamakin, domin ta san wani abu game da yanayin da aka ɓoye daga 'ya'yanta maza. Gyara, Weiss ya tambayi Ricky abin da ya yi tsammani kiran wayar ya kasance game da shi. Ya amsa mata, "Kana aiki don Roses 65".
Babu bukatar a ce, mahaifiyarsa ta yi mamaki sosai ta hanyar rashin kuskuren da ya yi game da cystic fibrosis, kamar yadda mutane da yawa suka kasance tun daga wannan rana.
Har wa yau, ana amfani da kalmar "65 Roses" don taimakawa yara su sanya suna a yanayin su. Wannan kalmar ya zama alamar kasuwanci mai rijista ta Cibiyar Fibrosis ta Cystic, wadda ta ɗauki fure a matsayin alamarta.
Iyalan Weiss a Yau
Richard Weiss ya mutu daga matsalolin da suka danganci CF a shekarar 2014. Ya bar iyayensa Maryamu da Harry, matarsa, Lisa, da kare su, Keppie, da ɗan'uwansa Anthony. Iyalinsa sun kasance masu sadaukar da kansu don neman magani ga cystic fibrosis.
Game da tsarin Cystic Fibrosis
An kafa Cibiyar Fibrosis ta Cystic (wanda aka fi sani da Fondon CF) a 1955. Lokacin da aka kafa harsashin, yara da aka haife su tare da cystic fibrosis ba sa sa ran su rayu tsawon lokaci don halartar makaranta. Na gode wa kokarin da iyalansu ke yi kamar gidan Weiss, an sami kuɗi don ƙaddamar da bincike don ƙarin koyo game da wannan rashin lafiya. A cikin shekaru bakwai na farkon kafuwar, yawan shekarun rayuwa ya kai har zuwa shekaru 10, kuma ya ci gaba da ƙaruwa tun daga lokacin.
A cikin lokaci, harsashin ya fara tallafawa bincike da ci gaban ƙwayoyi da maganin CF. Kusan kowane likitancin takardun magani na FDA don samuwa na yau da kullum da aka samu a yau ya yiwu a sashi saboda goyon baya ga tushe.
A yau, Ƙungiyar ta CF ta goyi bayan bincike na ci gaba, tana ba da kula ta hanyar kula da kulawan CF da shirye-shiryen haɗin gwiwa, da kuma samar da wadata ga mutanen da ke da CF da iyalansu.
Sanin ganewar asali har ma kafin bayyanar cututtuka ya bayyana ya bar yara da yawa tare da CF don karɓar jiyya
Binciko ga Fibrosis da masu sufuri
Anyi ingantawa ba kawai a cikin maganin cystic fibrosis ba, amma iyawarmu na gano cutar nan da wuri kuma har ma gano idan iyayensu zasu faru da kwayar halitta.
Kwanan gwaji na yanzu yana samuwa don sanin idan kun kasance daya daga cikin mutane miliyan 10 a Amurka wanda ke dauke da tsarin CF-maye gurbin a cikin fadin CFTR .
An yi jarrabawar jariri don cystic fibrosis a yawancin jihohin, kuma zai iya gano yiwuwar cewa jigilar jini ya kasance kuma ya kai ga ƙarin gwaji.
Kafin gwajin wannan gwajin cutar ba a gano shi ba har sai bayyanar cututtuka sun bayyana, ciki har da girma da jinkiri da matsaloli na numfashi. Yanzu, ko da kafin cutar ta bayyana, za a fara fara magani .
Cystic Fibrosis Advocacy
Idan an matsa ku shiga cikin kokarin iyali na Weiss don yin bambanci ga wadanda ke da kyamarar fibrosis, koyi game da zama mai bada shawara. Don samun kyakkyawan ra'ayi na farko game da manyan canje-canje da aka sanya a cikin rayuwar waɗanda ke fama da cutar. duba waɗannan mutane masu sanannen mutane tare da cystic fibrosis wadanda suke, kuma sun kasance, da kuma misali na bege.
Sources:
Foundation na Fibrosis na Cystic. Wasanni na Roses na 65. https://www.cff.org/About-Us/Suran-the-Cystic-Fibrosis-Foundation/The-65-Roses-Story/
Ƙungiyar Ma'aikatar Medicine ta Amurka. Medline Plus. Cystic Fibrosis. Updated 02/15/16. https://medlineplus.gov/ency/article/000107.htm