Funda nge-ALD Treatment ephefumulelwe nguLornzo Odone
Ioli ye-Lorenzo yonyango olwenzelwe ubuntwaneni obunomdlavuza we- cerebral adrenoleukodystrophy (ALD) , ingxaki engavamile kwaye iyingozi yokudangala i-myelin. Kule minyaka, unyango luye lwafumana umbulelo olunzulu ngokuqhubekayo kuphando lwezenzululwazi, i-Myelin Project, kunye nefilimu ye-1992, i -Oil ye-Lorenzo.
Isingeniso kwi-Adrenoleukodystrophy (ALD)
I-Adrenoleukodystrophy (ALD) isifo sofuzo esibangela ukuba kwakhiwe i-fatty chain chainty acids etshabalalisa i-myelin, isikhokelo sokukhusela phezu kwee-neurons engqondweni.
Ngaphandle kwezi khuselo ezikhuselayo, iimpawu ezinokukhubazeka ezifana nobuphofu, ukungaboniyo, ukuxhatshazwa, ukulahleka kwemisipha kunye nokuphefumula komzimba okuqhubekayo kungenzeka.
Iimpawu ze-ALD ngokubanzi zivela phakathi kweminyaka emine neshumi. Isifo siyaqhubeka ngokukhawuleza kwaye ngokuqhelekileyo sisifo phakathi kweminyaka emibili ukuya kweyimihlanu yesifo. Ngenxa yendlela i-ALD ilizuze ngayo, nge-X ye-chromosome, ifom ephezulu kakhulu yemo ichaphazela abafana kuphela. I-adrenal gland ichaphazelekayo, eyaziwa ngokuthi isifo se-Addison, kwipesenti ezingama-90 zeemeko.
Uluphi ioli kaLornzo?
Ngokutsho kweProjekthi ye-Myelin, i-Oyili ye-Lorenzo idibanisa inhlanganisela ye-4 ukuya kwe-1 ye-erucic acid kunye ne-oleic acid, ephuma kwioli ye-rapeseed kunye neoli yeoli, ngokulandelanayo. Ulwaphulo lweoli, xa lusekuqaleni kwamakhwenkwe angabonakaliyo kunye ne-ALD, okanye abafana abangakhange babonakalise iimpawu, kuye kwafakazelwa ukunciphisa inani lamanqatha amaninzi e-fatty acids xa isetyenziswe imihla ngemihla, eyokunciphisa ukuqala kwesi sifo.
Nangona kunjalo, uphando alukwazanga ukubonisa ukuba ioli iyayeka ukunyuka kwesifo kwaye iyaziwa ukuba ayiyikuguqula okanye ilungise i-myelin eyonakalisiwe. Ingonyango engcono kakhulu ekhoyo okwangoku i-ALD yintsipho yomnxeba ukutshala ngelixa iqhubekile. Nangona kunjalo, ukuguquka komncuba wethambo kuyingozi kakhulu kwizigulane eziselula ngenxa yobungozi bokusuleleka kunye nokuchaswa.
Umfana ophefumlelwe unyango
Unyango lubizwa ngokuthi "ioli yeLornzo" emva koLornzo Odone, inkwenkwe ene-ALD abazali bayo, uMikhaela noAugusto, benqaba ukwamukelwa ukuba kwakungekho unyango lwe-ALD kwaye uLorenzo uza kufa emva nje kokuvavanywa ngo-1984. , Abazali bakaLorenzo bancedisa ukuphuhlisa ioli.
Emva kokuthatha ioli nganye imihla ukususela ekuphuhlisweni kwayo, u-Lorenzo ekugqibeleni waphila izibikezelo zoogqirha ngaphezu kweminyaka engama-20. Wafa ngelinye ilanga emva kokuzalwa kwakhe okungama-30 kwiingxaki ze-pneumonia. Ibali leentsapho liye laziwa ngokugqithiseleyo kwifilimu ka-1992, i -Oil yeLornzo , ehamba kunye noSusan Sarandon noNick Nolte.
Ukufumaneka kweoli yeLornzo
Ioli ye-Lorenzo okwangoku iyatholakala kuphela kwizigulane zaseUnited States ezibhalwe kwilingo lekliniki njengoko libhekwa njengelinye iziyobisi. Ioli ayigunyaziwe yi-US Food and Drug Administration (FDA) yokuthengisa. Oko kwathiwa, ezinye iinshurensi zingabandakanya iindleko zonyango lovavanyo. Ioli yenziwe ngokubambisana yiCroda International yaseBrithani kunye ne-SHS International. I-SHS yamazwe ngamazwe ngamazwe ngamazwe ngamafutha.
Izibonelelo ezinxulumene nokuFunda okuqhubekayo
Ngaba ufuna ukufunda okungakumbi malunga ne-ALD, i-Lorenzo Odone, kunye nezinye iingxaki ezingavamile zofuzo?
Fumana amanqaku apha apha:
- Okunye malunga ne-ALD kunye no-Lorenzo Odone
- Izifo ezithintekayo zoMzimba ezichaphazela abantu
Umthombo:
"Ulwazi malunga neoli kaLornzo." Project Myelin. 13 Feyi 2009