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Inyanga yokuQatshelwa kweSeli ye-Sickle

By UWivine N

Xa ndandicelwa ukuba ndibhale iposti yebhlog ngesifo se-sickle cell (SCD) seNyanga yokuQatshelwa kweSickle Cell, ndandichulumancile yaye phezu kwenyanga. Ekugqibeleni - ukucelwa ukuba ndibhale ngesihloko mhlawumbi esithatha indawo enkulu entliziyweni yam. Kodwa ndiyavuma, kwathatha ixesha elide ukuba ndihlale phantsi ndize ndicingisise. Ndizidlulisela njani iimvakalelo eziza nokubukela umntu endimthandayo ekhatywa kumnyango wesibhedlele xa izikhalo zokubandezeleka okuthe cwaka zipeyintwe ngeembono zokuphelisa ingqalelo? Uqala phi umntu xa efuna ukufundisa abaphulaphuli ngokubanzi malunga nenye into ebuhlungu ngokwenene etshatela abanye bethu - abaphulaphuli apho uninzi lwabo lungayi kubona okanye bazive iimpembelelo zabo emva kweminyango evaliweyo yommelwane. Ndithini xa ndithetha ngentlupheko kamama? Ilali eshiyeke nomntwana omnye omncinci wokukhuliswa? Ngaba kuphela ngesabelo eside esibhaliweyo esivela kwikhosi ye-Master of Public Health apho ithuba likhona lokubonisa ngokubanzi indlela izimo zengqondo zomboneleli kunye nokuziphatha okungalunganga kwizigulane ezine-SCD, ukubekwa ibala kweendlela zokuziphatha ezifuna ukhathalelo lwezigulane, kunye nokungaqiniseki malunga nendlela yokuphatha abaNtsundu. / Izigulana zase-Afrika zaseMelika zikhokelela esibhedlele rhoqo okanye ukuchazwa okukhulu kweempawu? Yeyiphi ekhokelela ekonyukeni komngcipheko, ukuphindaphinda, kunye nobunzima beengxaki ze-SCD? Yintoni enokukhokelela kuzo zonke iintlobo zomgangatho wobomi, kubandakanywa nokufa?

Uzulazula kwaye ucinga ngokuvakalayo ngoku.

Kodwa, mhlawumbi ndingabonisa uphando lwam ngeenxa zonke xa ndifumene kwaye ndiphonononga idatha yerekhodi yezonyango yabantu abaphila nesifo se-sickle cell eColorado ukufumanisa ukuba ukusetyenziswa kwe-ketamine esebenzayo kunciphisa iidosi eziphezulu ze-opioid ezihlala zifunwa / ziceliwe kwintlungu enzima ye-sickle cell pain. . Okanye iminyaka yam elabhoratri, ndisenza iipolypeptides zokwenziwa njengendlela yokulwa nokugula eya kwandisa umanyano lwegazi lweoksijini. Ndikhe ndacinga ngokubhala kwezinye iinyani ezingenakubalwa endizifundileyo kwizifundo zam ze-MPH, njengendlela oogqirha bamayeza osapho abangonwabanga ngayo kulawulo lwe-SCD, ngokuyinxenye ngenxa yokunxibelelana nabantu base-Afrika baseMelika.1 - okanye indlela i-cross-sectional enomdla, uhlalutyo oluthelekisayo lwe-National Hospital Ambulatory Medical Care Survey phakathi kwe-2003 kunye ne-2008 ibonise ukuba izigulane zase-Afrika zaseMelika ezine-SCD zafumana amaxesha okulinda ayengama-25% ubude kuneSampuli yeSigulana esiqhelekileyo.2

Inye into endiyaziyo ukuba ndiyathanda ukwabelana nabanye ngenkxaso-mali ye-sickle cell xa kuthelekiswa nezinye izifo. Oku kuchazwa ngokuyinxenye ngumsantsa omkhulu okhoyo kwinkxaso-mali yabucala nekarhulumente yophando lwezonyango phakathi kwezifo ezichaphazela abemi abaMnyama nabamhlophe kwilizwe lethu.3 Umzekelo, i-cystic fibrosis (CF) sisifo sofuzo esichaphazela abantu abamalunga nama-30,000, xa kuthelekiswa ne-100,000 echatshazelwa yi-SCD.4 Ngokwembono eyahlukileyo, i-90% yabantu abaphila ne-CF bamhlophe ngelixa i-98% yabo baphila ne-SCD ingabantu abamnyama.3 Njenge-SCD, i-CF ngoyena nobangela wokugula nokufa kwabantu, iba mandundu ngokuya ngeminyaka, ifuna iirejimeni ezingqongqo zamachiza, iphumela ekulalisweni okungapheliyo, kwaye inciphisa ixesha lokuphila.5 Kwaye nangona oku kufana, kukho ukungafani okukhulu kwinkxaso-mali yenkxaso phakathi kwezi zifo zibini, kunye ne-CF ifumana ngokuphindwe kane imali karhulumente evela kumaZiko ezeMpilo eSizwe (i-254 yezigidi zeedola) xa kuthelekiswa ne-SCD (i-66 yezigidi zeedola).4,6

Inzima kakhulu. Mandibuye umva ndiqale ngomama.

Umama wam ngumphambukeli wase-Afrika osuka kwi-Democratic Republic of Congo ochithe iminyaka engamashumi amabini anesibini yokuqala yobomi bakhe e-Normal, e-Illinois ephotha iinwele. I-aesthetics yakhe esembindini we-Afrika, idityaniswe nobuchule bakhe obuntsonkothileyo beminwe kunye neliso elibukhali lemfezeko, yakhawuleza yamenza i-hair braider ehlonelwayo kuluntu lwase-Afrika yaseMelika kwindawo yaseBloomington-Eqhelekileyo iminyaka. Idinga elinye lalidla ngokuthatha iiyure ezininzi ngexesha kwaye umama wayethetha isiNgesi esincinci. Ngokwendalo, uye wadlala indima yokuphulaphula njengoko abathengi bakhe babesabelana ngee-anecdotes malunga nobomi babo nobabantwana babo. Umxholo ophindaphindiweyo owawusoloko undithakazelisa njengoko ndandihleli ekoneni ndifaka imibala okanye ndisenza umsebenzi wam wasekhaya yayikukungathembi kunye nokucaphukela i-Advocate BroMenn Medical Centre, esona sibhedlele sikhulu kwingingqi yaseBloomington-Normal. Esi sibhedlele sibonakala sinommeli ombi kuluntu lwase-Afrika lwaseMelika kwinto enokuthi ichazwe ngokusesikweni njengomboneleli ongathathi hlangothi kunye nokhathalelo olungenabuchule ngokwenkcubeko. Kodwa, abathengi bakamama babebuthuntu kwiiakhawunti zabo kwaye bayibiza ngokuba yayiyintoni - ubuhlanga. Njengoko kwavelayo, ubuhlanga yayiyenye yezinto ezininzi zokhathalelo lwempilo ezakha ezi mbono; eminye yayiquka ukungakhathalelwa, umkhethe nekhethe.

Ukungahoywa kwamshiya ekwikoma udadewethu kangangeentsuku ezili-10 xa wayeneminyaka esi-8 ubudala. Ikhethe nokungakhathali kwabangela ukuba angayigqiba iminyaka emibini xa egqiba esikolweni. I-bias (kwaye ngokungathandabuzekiyo, ukunqongophala kobuchule ngababoneleli bezonyango) kwakhokelela ekubeni sibe sinye istroke eneminyaka engama-21 kwaye esinye sichaphazele elinye icala kwiminyaka engama-24 ubudala. .

Ukuza kuthi ga ngoku, izigidi zamagama endiwabhalileyo ephepheni malunga nayo nayiphi na into enento yokwenza ne-sickle cell ibisoloko isenziwa malunga nomxholo wesifo, usizi, ubuhlanga, unyango olungekho mgangathweni, kunye nokufa. Kodwa eyona nto ndiyixabisa kakhulu malunga nexesha leposti yebhlog- malunga nayo yiNyanga yoKwazisa ngeSickle Cell ngonyaka ka-2022- kukuba ekugqibeleni ndinento emnandi kakhulu endinokuthi ndibhale ngayo. Kangangeminyaka, ndilandele iinkokeli zonyango lwe-sickle cell kunye nophando. Ndiye ndahamba ukuze ndifunde kwezona zibalaseleyo, ndinyange isiseko solwazi seendlela zokuququzelela unyango lukadade wethu kwaye ndilubuyisele ekhaya. Ngo-2018, ndemka eColorado ndaya kuhlala kufutshane nodadewethu e-Illinois. Ndidibene neenkokeli zophando zeqela le-Hematology & Stem Cell Transplant kwiYunivesithi yase-Illinois eChicago's Hematology/Oncology Department - kwa ezo nkokeli ziye zasikhaba isicelo sikamama - sokubanga indawo yethu. Kuyo yonke i-2019, ndisebenze ngokusondeleyo nomongikazi okhokelayo (NP) ukunceda ukuqinisekisa ukuba udade wethu uya kwindibano yakhe yesigidi-nye enokulinganisa amandla akhe okufumana uqhaqho. Ngo-2020, ndafumana umnxeba ovela ku-NP owathi, ngeenyembezi zovuyo, wabuza ukuba ndiyafuna na ukuba ngumxhasi we-stem cell donor kadadewethu. Kananjalo ngo-2020, ndanikezela ngeeseli zam, into ebendingenakuyenza kude kube yiminyaka embalwa ngaphambili ngenxa yokuba ngumdlalo wesiqingatha kuphela, emva koko ndabuyela ezintabeni endizithandayo. Kwaye ngo-2021, unyaka omnye emva komnikelo, umzimba wakhe wawuzamkele ngokupheleleyo iiseli ze-stem - ezazize nesitampu sezonyango sokuqinisekisa. Namhlanje, uAmy ukhululekile kwisifo sakhe se-sickle cell kwaye uphila ubomi njengoko wayezicingela. Okokuqala.

Ndiyabulela kwiColorado Access ngethuba lokubhala malunga neseli ye-sickle kwimeko efanelekileyo - okokuqala ngqa. Kwabo banomdla, zive ukhululekile ukucofa kwikhonkco elingezantsi ukuva amabali kadadewethu kunye nomama, ngqo kumthombo.

https://youtu.be/xGcHE7EkzdQ

Ucaphulo

  1. Mainous AG III, Tanner RJ, Harle CA, Baker R, Shokar NK, Hulihan MM. Izimo zengqondo malunga noLawulo lweSifo seSickle Cell kunye neeNgxaki zayo: uPhando lweSizwe lweeGqirha zeSapho sezeMfundo. 2015;853835:1-6.
  2. UHaywood C Jr, uTanabe P, uNaik R, i-Beach MC, iLanzkron S. Impembelelo yobuhlanga kunye nezifo kwiSickle Cell Isigulane sokulinda amaXesha kwiSebe likaxakeka. NdinguJ Emerg Med. 2013;31(4):651-656.
  3. Gibson, GA. Martin Centre Sickle Cell Initiative. ISickle Cell Disease: Ukwahlukana kweMpilo okuGqibeleleyo. 2013. Ifumaneka ku: http://www.themartincenter.org/docs/Sickle%20Cell%20Disease%20 The%20Ultimate%20Health%20Disparity_Published.pdf.
  4. UNelson SC, uHackman HW. Imiba yobuhlanga: Iimbono zobuhlanga kunye nobuhlanga kwiZiko leSickle Cell. Umhlaza wegazi wePediatr. 2012;1-4.
  5. UHaywood C Jr, uTanabe P, uNaik R, i-Beach MC, iLanzkron S. Impembelelo yobuhlanga kunye nezifo kwiSickle Cell Isigulane sokulinda amaXesha kwiSebe likaxakeka. NdinguJ Emerg Med. 2013;31(4):651-656.
  6. I-Brandow, i-AM kunye ne-Panepinto, i-JA Hydroxyurea Ukusetyenziswa kwiSifo seSickle Cell: Idabi elinamaxabiso aphantsi okuMiselweyo, ukuthotyelwa kwesigulane esibi, kunye noloyiko lwe-Toxicities kunye ne-Side Effects. Ingcaphephe Rev Hematol. 2010;3(3):255-260.