65 Roses uye Kutsanangura Cystic Fibrosis Kuvana
Chii chiri "65 Roses?"
Izwi rokuti "65 roses" ndiro zita rezita rokuti cystic fibrosis (CF). Cystic fibrosis inonzi genetic condition inokonzera kudya kwemvura, sweat, uye masikidzi kuti ave akaoma uye asinganzwisisiki-kudzivirira mhepo, mafunguro ekudya, uye mamwe mahara mumuviri wose. Nemhaka yekuvharwa kwegandanyama kunokonzerwa neCF, chirwere chacho chinozopedzisira chauraya.
Mazuva ano, nokuda kwekutsvakurudza uye kufambira mberi mune zvemishonga, vanhu vazhinji vane CF vanorarama zvakanaka kusvika kune makumi matatu uye muvhareji wekupona mu 2016 waiva nemakore 37.
Makumi emakore apfuura, zvisinei-mberi kwehutungamiri hwemazuva ano hwedu-tarisiro yehupenyu yevaya vane CF haina kumbopfuura munguva yevana vaduku.
Nhau Icho Chine Nguva Yacho "65 Roses"
Izwi rokuti "65 roses" rakagadzirwa kumapeto kwema1960, naRichard (Ricky) Weiss ane makore mana ane cystic fibrosis. Amai vomukomana, Mary G. Weiss, vakazvipira kuCystic Fibrosis Foundation muna 1965 mushure mekunge vaziva kuti vanakomana vake vatatu vakanga vane CF. Kuti vabatsire kusimudza mari yechirwere ichi, Weiss akatumira foni kuti awane rubatsiro rwekutsvakurudza kweCF. Pasingazive Weiss, Ricky akanga ari pedyo, achiterera mukati memafoni ake.
Rimwe zuva, Ricky, paine makore mana, akasangana naamai vake ndokumuudza kuti aiziva nezvekudana kwake. Amai vake vakashamisika, nokuti vakanga vachengeta chero ruzivo rwechiitiko chakavanzika kubva kuvana vavo. Achinetseka, Weiss akakumbira Ricky zvaaifunga kuti foni dzacho dzaive. Akapindura akati, "Uri kushanda 65 Roses."
Hazvina maturo kutaura, amai vake vakanga vachishamiswa zvikuru nekusatendeseka kwake kusina mhosva kwe cystic fibrosis, sekune vanhu vazhinji kubva pazuva iroro.
Kusvikira nhasi, izwi rokuti "65 Roses" rakashandiswa nekubatsira vana kuisa zita kumamiriro avo. Mutsara wacho kubvira panguva iyo wakave chiratidzo chekunyora cheCystic Fibrosis Foundation, iyo yakagamuchira rose sechiratidzo chayo.
The Weiss Family Nhasi
Richard Weiss akafa nekuda kwezvinetso zvakabatana neCF muna 2014. Anopona nevabereki vake Mary naHarry, mudzimai wake, Lisa, imbwa yavo, Keppie, uye munin'ina wake, Anthony. Mhuri yake inoramba yakatsaurirwa kuwana mushonga we cystic fibrosis.
NezveCystic Fibrosis Foundation
ICystic Fibrosis Foundation (inozivikanwawo seCF Foundation) yakavakwa muna 1955. Apo nheyo yakagadzirwa, vana vakaberekerwa ne cystic fibrosis vakanga vasingatarisiri kurarama kwenguva yakakwana yekuenda kuchikoro chepuraimari. Kutenda kuedza kwemhuri yakafanana nemhuri ye Weiss, mari yakasimudzirwa kufambisa tsvakurudzo kuti idzidze zvakawanda nezvechirwere ichi chisinganzwisisiki. Mumakore manomwe ekutanga kwenheyo, nguva yepakati yekupona yakakwira kusvika kumazera gumi, uye yakaramba ichingowedzera kubva ipapo.
Nokufamba kwenguva, nheyo dzakatangawo kutsigira kutsvakurudza nekuvandudzwa kweCF-zvinodhaka zvinodhaka uye mishonga. Munenge mishonga yose yemishonga inogamuchirwa neDAA ye cystic fibrosis inowanika nhasi yakagonekeka muchikamu nekuda kwekutsigirwa kweheyo.
Nhasi, CF Foundation inotsigira kutsvakurudza kwakaenderera mberi, inopa hutano kuburikidza neCF nhepfenyuro uye mapurogiramu akabatanidzwa, uye inopa ruzivo rwevanhu vane CF nemhuri dzavo.
Kuziva nezvekuongororwa kunyange zviratidzo zvisati zvaonekwa zvinobvumira vana vakawanda vane CF kuti vagamuchire kurapwa
Kuongorora kweCystic Fibrosis uye Vanotakura
Kuvandudzwa kwakaitwa kwete kwete chete mukurapa kwe cystic fibrosis, asi kukwanisa kwedu kuona chirwere pakutanga nekutsvaga kana vabereki vanoitika kutakura geni.
Kuenzanisa kwemajeni ikozvino kwawanikwa kuti uone kana iwe uri mumwe wevanhu vane mamiriyoni gumi vari muUnited States vanotakura CF Trait-kuchinja mune CFTR gene .
Kuonekwa patsva kwe cystic fibrosis kunoitwa mune dzimwe nyika, uye kunogona kuona kuti zvinoitika kuti geni iripo uye inotungamirira kuongororwa zvakare.
Izvi zvisati zvaedzwa, chirwere chacho chakanga chisingawanzoongororwa kusvikira zviratidzo zvaonekwa, kusanganisira kukurumidza kukura uye zvinetso zvokufema. Iye zvino, kunyange chirwere chisati chaonekwa, mushonga unogona kutanga.
Cystic Fibrosis Advocacy
Kana iwe uchinge waita kuti ubatane nemhuri ye Weiss mukuita mutsauko kune avo vane cystic fibrosis, dzidza zvakawanda pamusoro pokuva mutongi. Kuti uwane pfungwa yakanaka pane yekutanga nezvekuchinja kukuru kwekukurudzira kwakaitwa muhupenyu hweavo vanorarama nehosha. chengeta vanhu ava vakakurumbira ne cystic fibrosis ivo, uye vave, uye muenzaniso wetariro.
Sources:
Cystic Fibrosis Foundation. Ross 65 Nyaya. https://www.cff.org/About-Us/About-the-Cystic-Fibrosis-Rudziro/The-65-Roses-Story/
US National Library of Medicine. Medline Plus. Cystic Fibrosis. Yapindurwa 02/15/16. https://medlineplus.gov/ency/article/000107.htm