Mafirimu Anokurudzira Kuziva Nezvimwe Zvisingawanzo
Zvirwere uye zvirwere zvinowanzotarisirwa nesappy, isina-yakagadzirwa, yakaitwa-for-TV mafirimu. Izvozvo hazvisizvo nemamwe mafirimu mashanu. Chimwe nechimwe chemafirimu aya chinotarisa zvirwere zvisingaoneki uye zvinetso zvinowanikwa mufirimu yacho; kwete kungofanana nemafungiro nemapurani.
Mamwe mashoma aya mafirimu aive akakurumbira zvikuru pakati pevhidhiyo uye vane mabasa anonyatsorumbidzwa, asi vamwe vaisakanganwa nevanhu; kungoita blips pamusoro pe radar. Kunyange zvakadaro, rimwe nerimwe remafirimu rinofanira kuona. Vane chokwadi chekuchinja maonero enyu kuti ave nani pane maonero aunoona uye kukurukura zvakakomba, asi zvisingazivikanwi, zvirwere zvisingaoneki uye zvinetso.
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The Elephant Man (1980)"The Elephant Man" inofanirwa nefirimu ya1980 inobatanidza John Hurt, Anthony Hopkins, Anne Bancroft naJohn Gielgud. Anenge anenge munhu wese anoona iyo firimu inofarira iyo, iyo John Hurt inoratidzira Joseph Merrick, akatumidzwa kuti "Elephant Man" nekuda kwekuvhiringidzika kwezvinhu zvaive zvichida Proteus syndrome . Merrick's deformities akaita kuti ave munhu asina kuchena. Hurukuro inopenya sezvaanoratidza munhu akachenjera, ane hanya mushure me maski.
Pakutanga, zvakange zvisiri izvo zvaifunga kuti nzou inotambura neurofibromatosis , mamiriro ayo mumamera anowedzera mumatope. Murume wejovu, nenzira yakasiyana, akanga asina mahwendefa ane ruvara rweveurourobibatatosis, uye panzvimbo pacho, tsvakurudzo ye-x-ray uye CT yeChirrick yakaitwa muna 1996 yakaratidza kuti mvere dzake dzakakura kubva pfupa nematehwe echeputi, iyo inoratidzirwa yeProteus syndrome.
Nyaya ndeyekuti Merrick akararama kubva muna 1862 kusvika muna 1890, asi Proteus disorder haina kuzivikanwa kusvika muna 1979. Zvichida kune huwandu hwezvinetso zvisingaoneki zviripo nhasi izvo zvicharatidzwa uye zvinonzwisiswa mberi mune ramangwana.
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Lorenzo's Oil (1992)Imwe firimu ya1992 "Lorenzo's Oil" nyeredzi Hollywood nzara huru Susan Sarandon naNick Nolte. "Lorenzo's Oil" inotaurira nyaya yevabereki Augusto uye kurwisana kwaMichaela Odone kutsvaga kurapwa kwemwanakomana wavo Lorenzo's adrenoleukodystrophy (ALD), chirwere chinokonzera maitiro. Mafirimu anopa kufungidzira, kunonzwisa mafungiro kwechirwere ichi chinoramba chichirarama neurological, asi pane zvimwe zvisiri izvo. Kunyange zvakadaro, uchafara nekuda kwekubudirira kwemhuri.
Adrenoleukodystrophy inorwara, inowanikwa muzvinyorwa zvinotaridzika zvakabatana ne X chromosome. Sezvo zvakadaro, chirwere chinowanikwa chete muvakomana. (Dzidza zvakawanda pamusoro pemapurogiramu efa muhutano hwema genetic .)
Chirwere chacho chiri kufambira mberi, chinosanganisira kuora kweeelin, yakafanana nezvimwe zvirwere zvakadai se multiple sclerosis . Myelin anoita sehupfeko pamusoro petsvimbo yemagetsi, uye apo "kupfeka" uku kuparadzwa, kupararira kwemashoko kumativi ose emagetsi kunonoka.
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The Tic Code (1998)"The Tic Code" nyeredzi Christopher Marquette, Gregory Hines naPolly Draper. Mumwe mukomana ane makore gumi (Marquette) uye mutambi we saxophone (Hines) vanosangana ndokuona kuti vose vane Tourette syndrome. Zvisinei, mumwe nomumwe anobata nayo nenzira yake pachake. Mukomana wacho akachinja maitiro ake, asi murume akwegura anoedza kumubata uye anovhiringidza mafungiro emukomana.
Kune nzira dzakasiyana-siyana dzinoita kuti izvi zviitike, asi nzira iyo inowanzoenzaniswa mumasvikiro-nemashoko anonyadzisa uye zviratidzo-zvisinganyanyi kushamisa.
Ndinofara kune ikozvino mishonga inoverengeka inowanikwa inogona kubatsira vanhu ava-avo vanowanzotarisana naTourette munguva yekuyaruka kusvika pakuyaruka.
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The Mighty (1998)"Wamasimba" iyo firimu inofadza iwe zvichida hauna kumbonzwa nezvazvo, uchiona naSharon Stone, Gena Rowlands, uye Harry Dean Stanton. Kevin mucheche ane makore 13 ane Morquio syndrome, chirwere chinoramba chichiwedzera, uye Max, mwana anofamba-famba ane pfungwa dzakaderera-anonzwa kuti anotarisa "saMwarizilla" -as dyslexia. Izvo zviviri zvinoumba ushamwari husingafungi kana Kevin achiva Max yekuverenga mudzidzisi.
Morquio syndrome inotorwa mufosimasi inoshandiswa mafashoni inonzi inofanirwa nemukololysaccaridoses (MPS), zvirwere zvinokonzerwa nekusavapo kwemakemikari anowanikwa mune zvinoenderana nemasabolism. Morquio syndrome inofungidzirwa kuti MPS IV, nepo Hurler syndrome iyo vanhu vangave vanozivikanwa inofungidzirwa kuti MPS I kana II. Chirwere chacho chine zvakawanda zvinowanikwa kubva pfupa nekubatana zvisina kukodzera, kukanganisa mafungiro, kukonzera kuputika, nezvimwe.
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Mufaro Wechitanhatu (1997)Iyi firimu ya 1997 "The Sixth Happiness" yakatarwa naFirdaus Kanga naSouad Faress vakasunungurwa muUnited Kingdom. Yakavakirwa pahupenyu hweKanga, hwakanzi "Kuedza Kukura." Kanga anonyatsotamba ari mumufirimu uyu. Iyi firimu inotaura nyaya yemukomana anonzi Brit anokura muIndia. Akaberekwa ane chirwere chinokonzera mapfupa ake achizora uye haamboregi kureba kupfuura mamita mana. Brit inonakidza, inonakidza, uye inonyatsojeka munhu uyo anorwisana nehupombwe hwake nezvinetso zvehupenyu nenzira yake yakasiyana, asi vabereki vake vane maonero akasiyana kwazvo pamusoro pekuremara kwake.
Kunyange zvazvo bhafirimu iyi isingaratidze chirwere chisingawanzozivikanwi (kunyange chichienderana ne osteogenesis imperfecta nenzira dzakawanda) inogona kubatsira kusimudza ruzivo pamusoro pezvirwere zvishoma zvisingawanzoitiki uye zvisingawanzoti zvinosanganisira mafupa asina kuchena uye anowanikwa.
Osteogenesis imperfecta ndiyo chirwere chakakonzerwa "brittle bone chirwere." Chirwere ichi chinokonzerwa nechirema muhando ye collagen inowanikwa mumapfupa, ligaments, uye ziso, uye kazhinji inotungamirira kumapfupa akawanda akaputsika pamwe nekusvika kwenguva pfupi. Kune dzimwe nzira dzakasiyana-siyana dzechirwere, nekuoma kwakasiyana-siyana zvikuru kune avo vane chimiro chakafanana chechirwere. Ndinofara, kufambira mberi kwezvinoitika mukurapa, kwakadai sekuya kwehutachiona hwehutachiona, kuri kubatsira kuvandudza upenyu hwevamwe vanhu ava.
Mutsara mutsva unonzi unofara kana urefu hwevanhu vakuru huri mamita masendimita 10 kana zvishoma uye hune zvikonzero zvakawanda.
Mukuwedzera kune mafirimu anosimudzira kuzivikanwa kwezvirwere zvisingawanzoitiki, vanhu vane zvimwe zvezviitiko izvi vakashandisa mamiriro avo nenzira yakakurumbira yechinyorwa chesirivha. Muenzaniso ndiJohan Ryan Evans , mutambi ane achondroplasia, uye basa rake mune zvakawanda zvinyorwa zvinosanganisira Maitiro aGrish akachengetedza Krisimasi .
Sources:
US National Library of Medicine. Morquio Syndrome. Kushandurwa 04/20/1. https://medlineplus.gov/ency/article/001206.htm
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