Phunzirani za ALD Chithandizo Cholimbikitsidwa ndi Lorenzo Odone
Mafuta a Lorenzo ndi mankhwala omwe amachititsa kuti ubongo ukhale wodwala adrenoleukodystrophy (ALD) , matenda osachiritsika omwe amawoneka kuti ndi ofooka kwambiri. Kwa zaka zambiri, chithandizochi chadziwika kwambiri chifukwa cha kufufuza kwa sayansi, Myelin Project, ndi filimu ya 1992, Mafuta a Lorenzo.
Chiyambi cha Adrenoleukodystrophy (ALD)
Adrenoleukodystrophy (ALD) ndi matenda a chibadwa omwe amachititsa kumanga mafuta ochuluka kwambiri omwe amachititsa kuti ndiwononge myelin, chivundikiro chotetezera pamwamba pa neurons mu ubongo.
Popanda chitetezo chotere, zizindikiro zowonongeka monga kusowa khungu, kugontha, kugwidwa, kuwonongeka kwa minofu, ndi kuthamangitsidwa kwaumtima mofulumira kungatheke.
Zizindikiro za ALD zimawoneka pakati pa zaka zinayi ndi khumi. Matendawa amayenda mofulumira ndipo kawirikawiri amafa pakapita zaka ziwiri kapena zisanu zachizindikiro. Chifukwa cha njira yomwe ALD imatengera, kudzera mu X chromosome, mtundu wovuta kwambiri wa chikhalidwe umakhudza anyamata okha. Matenda a adrenal amachitanso chidwi, omwe amadziwika kuti Matenda a Addison, mu 90 peresenti ya milandu.
Kodi mafuta a Lorenzo ndi otani?
Malingana ndi The Myelin Project, Mafuta a Lorenzo ndi ophatikizapo 4 mpaka 1 kuphatikiza kwa erucic acid ndi oleic acid, omwe amachokera ku mafuta opatsirana ndi mafuta, motero. Mankhwala odzola mafuta, ngati ayambitsidwa ndi anyamata oyambirira ndi ALD, kapena anyamata omwe asanasonyeze zizindikiro, atsimikiziridwa kuti kuchepetsa kuchuluka kwa mafuta autali amatha tsiku lililonse, zomwe zingachepetse kuyamba kwa matendawa.
Komabe, kufufuza sikungathe kusonyeza kuti mafuta amasiya matenda opatsirana ndipo amadziwika kuti sichimasintha kapena kukonzanso myelin. Njira yabwino kwambiri yothandizira pakali pano ya ALD ndi kusakaniza mafupa a mafupa pamene imasintha. Komabe, kusintha kwa mafupa kumakhala koopsa kwambiri kwa odwala chifukwa cha kuopsa kwa matenda ndi kukanidwa.
Mnyamata Amene Anauza Chithandizochi
Mankhwalawa amatchedwa "Lorenzo mafuta" pambuyo pa Lorenzo Odone, mnyamata yemwe ali ndi ALD omwe makolo ake, Michaela ndi Augusto, anakana kuti palibe mankhwala a ALD komanso kuti Lorenzo adzafa posachedwa atadziwika mu 1984. Kupyolera mwa kufufuza kwakukulu ndi kulimbikira , Makolo a Lorenzo anathandiza kupanga mafuta.
Atatha mafutawa tsiku lililonse kuchokera pamene akukula, Lorenzo anamaliza kulosera madokotala zaka zoposa 20. Anamwalira tsiku lina atatha masiku 30 akubadwa kuchokera ku zovuta za chibayo. Nkhani ya banjayi inafotokozedwa mokondwera mu filimu ya 1992, Mafuta a Lorenzo , ndikuyang'ana Susan Sarandon ndi Nick Nolte.
Kupezeka kwa Mafuta a Lorenzo
Mafuta a Lorenzo pakalipano amapezeka kwa odwala omwe ali ku United States omwe amalembedwa ku mayesero a zachipatala ngati akadali ngati mankhwala oyesera. Mafuta sanaloleredwe ndi US Food and Drug Administration (FDA) pofuna kugulitsa. Izi zinati, inshuwalansi zina zingapangitse mtengo wa chithandizo choyesera. Mafutawa amapangidwa pamodzi ndi Croda International ya Britain ndi SHS International. SHS International ndi yogawira padziko lonse mafuta.
Zothandizira Zowonjezera Kuwerenga Kwambiri
Mukufuna kuti mudziwe zambiri za ALD, Lorenzo Odone, ndi zina zovuta za majini?
Pezani zina zambiri apa:
- Zambiri Za ALD ndi Lorenzo Odone
- Matenda Oposa Achibadwa Amene Amakhudza Amuna
Chitsime:
"Nkhani Zokhudza Mafuta a Lorenzo." Ntchito ya Myelin. 13 Feb 2009