Mwezi Wodziwitsa Maselo a Sickle

Nditafunsidwa kuti ndilembe positi pabulogu yokhudza matenda a sickle cell (SCD) ya Mwezi Wodziwitsa Maselo a Sickle, ndinali wosangalala kwambiri komanso mwezi. Pomaliza - kufunsidwa kuti ndilembe pamutu womwe mwina watenga malo ambiri mu mtima mwanga. Koma zoona zake n’zakuti zinanditengera nthawi yaitali kuti ndikhale pansi n’kuyamba kuganizira mozama. Kodi ndingafotokoze bwanji maganizo amene amadza ndi kuonerera wokondedwa akukanidwa pakhomo la chipatala pamene kulira kwa kuzunzika mwakachetechete kumalizidwa ndi malingaliro othetsa chisamaliro? Kodi munthu amayambira kuti akafuna kuphunzitsa anthu wamba za chinthu china chowawa kwambiri chomwe chimatengera ena a ife - omvera omwe ambiri sangawone kapena kumva zotsatira zake kuseri kwa zitseko zotsekedwa za mnansi. Kodi ndinganene bwanji kuti mayi akuvutika? Mudzi wotsala ndi mwana wocheperapo kuti alere? Kodi ndi kudzera mu ntchito yolembedwa yayitali kuchokera ku maphunziro a Master of Public Health komwe mwayi ulipo wofotokozera mozama momwe operekera operekera amachitira ndi machitidwe oyipa kwa odwala omwe ali ndi SCD, kusalidwa kwa machitidwe ofunafuna chisamaliro cha odwala, komanso kusatsimikizika kwa momwe angachitire anthu akuda. / Odwala aku Africa aku America amatsogolera kugonedwa m'chipatala pafupipafupi kapena kusawonetsa zambiri zazizindikiro? Zomwe zimapangitsa kuti chiwopsezo chiwonjezeke, pafupipafupi, komanso kuwopsa kwa zovuta za SCD? Zomwe zingayambitse mitundu yonse ya zizindikiro za moyo, kuphatikizapo imfa?

Kuthamanga ndi kuganiza mokweza tsopano.

Koma, mwina nditha kuwonetsa kafukufuku wanga pozungulira nditapeza ndikuwunikanso mbiri yachipatala ya anthu omwe ali ndi matenda a sickle cell ku Colorado kuti adziwe ngati kugwiritsa ntchito bwino ketamine kumachepetsa kuchuluka kwa ma opioid omwe nthawi zambiri amafunikira / kufunsidwa pamavuto opweteka kwambiri a cellle cell. . Kapena zaka zanga mu labotale, kupanga ma polypeptides opangidwa ngati njira yotsutsa kudwala yomwe ingawonjezere kuyanjana kwa magazi ndi mpweya. Ndaganizanso zolemba pazinthu zina zambiri zomwe ndaphunzira m'maphunziro anga a MPH, monga momwe madotolo azachipatala samakhala omasuka pakuwongolera SCD, mwa zina chifukwa cholumikizana ndi anthu aku Africa America.¹ - kapena momwe kupendekera kosangalatsa kwapagawo, koyerekeza kwa National Hospital Ambulatory Medical Care Survey pakati pa 2003 ndi 2008 kunawonetsa kuti odwala aku Africa aku America omwe ali ndi SCD adakumana ndi nthawi zodikirira zomwe zinali 25% yayitali kuposa General Patient Sample.²

Chomwe ndikudziwa kuti ndimakonda kugawana ndi - kusiyana kwa ndalama za sickle cell poyerekeza ndi matenda ena ndizodziwikiratu. Izi zikufotokozedwa pang'onopang'ono ndi kusiyana kwakukulu komwe kulipo mwachinsinsi komanso ndalama zapagulu zofufuza zachipatala pakati pa matenda omwe amakhudza anthu akuda ndi oyera m'dziko lathu.³ Mwachitsanzo, cystic fibrosis (CF) ndi vuto la majini lomwe limakhudza anthu pafupifupi 30,000, poyerekeza ndi 100,000 omwe amakhudzidwa ndi SCD.⁴ Mwanjira ina, 90% ya anthu okhala ndi CF ndi oyera pomwe 98% ya omwe ali ndi SCD ndi akuda.³ Mofanana ndi SCD, CF ndiyomwe imayambitsa matenda ndi imfa, imakula kwambiri ndi ukalamba, imafuna mankhwala okhwima a mankhwala, imapangitsa kuti munthu agoneke m'chipatala, ndipo amachepetsa moyo.⁵ Ndipo ngakhale kufanana kumeneku, pali kusiyana kwakukulu kwa ndalama zothandizira pakati pa matenda awiriwa, ndi CF imalandira ndalama zinayi za ndalama za boma kuchokera ku National Institutes of Health ($ 254 miliyoni) poyerekeza ndi SCD ($ 66 miliyoni).^4,6

Zolemera kwambiri. Ndisiyeni ndibwerere ndiyambe ndi mayi anga.

Amayi anga ndi ochokera ku Africa ochokera ku Democratic Republic of Congo omwe adakhala zaka makumi awiri ndi ziwiri za moyo wawo ku Normal, Illinois kuluka tsitsi. Kukongola kwake kwapakati ku Africa, kuphatikizidwa ndi luso lake lodabwitsa la zala komanso diso lachangu la ungwiro, zidamupangitsa kukhala woluka tsitsi lodziwika bwino kwa anthu aku Africa America kudera la Bloomington-Normal kwa zaka zambiri. Kukumana kamodzi kunkatenga maola angapo nthawi imodzi ndipo amayi anga ankalankhula Chingelezi chochepa kwambiri. Choncho mwachibadwa, ankamvetsera pamene makasitomala ake ankagawana nkhani zokhudza moyo wawo komanso za ana awo. Mutu wobwerezabwereza womwe nthawi zambiri unkandichititsa chidwi ndikakhala pakona kapena ndikuchita homuweki unali kusakhulupirira komanso kuipidwa kwa Advocate BroMenn Medical Center, chipatala chachikulu kwambiri m'dera la Bloomington-Normal. Chipatalachi chikuwoneka kuti chinali ndi chiwongolero choyipa pakati pa anthu aku America aku America pazomwe zitha kufotokozedwa ngati kukondera kopanda chithandizo komanso chisamaliro chosavomerezeka. Koma, makasitomala a amayi anga anali osayankhula bwino muakaunti yawo ndipo adayitcha kuti izi zinali - tsankho. Monga momwe zinakhalira, kusankhana mitundu kunali chimodzi mwa zifukwa zambiri zothandizira zaumoyo zomwe zinapanga malingaliro awa; zina zinali kunyalanyaza, kukondera, ndi tsankho.

Kunyalanyaza zinthu kunachititsa kuti mchemwali wanga akhale chikomokere kwa masiku 10 ali ndi zaka 8. Tsankho ndi kunyalanyazidwa kotheratu zinachititsa kuti asaphonye maphunziro a zaka pafupifupi ziwiri pomaliza sukulu ya sekondale. Kukondera (ndipo mosakayikira, kusowa kwa luso la ogwira ntchito zachipatala) kunayambitsa sitiroko imodzi ali ndi zaka 21 ndipo ina imakhudza mbali inayo ali ndi zaka 24. .

Mpaka pano, mamiliyoni a mawu omwe ndalembapo pa chilichonse chokhudzana ndi sickle cell akhala akupanga mozungulira matenda, chisoni, kusankhana mitundu, kusamalidwa bwino, komanso imfa. Koma chomwe ndimayamika kwambiri pa nthawi ya positi iyi yabulogu - zakuti ndi Mwezi Wodziwitsa Ma cell a Sickle mchaka cha 2022 - ndikuti pamapeto pake ndili ndi zina zabwino zoti ndilembe. Kwa zaka zambiri, ndatsatira atsogoleri a chithandizo cha sickle cell ndi kafukufuku. Ndayenda kuti ndiphunzire kuchokera ku zabwino, kupeza njira zothandizira chithandizo cha mlongo wanga ndikubwezeretsanso kunyumba. Mu 2018, ndinachoka ku Colorado kupita kufupi ndi mlongo wanga ku Illinois. Ndinakumana ndi atsogoleri ofufuza a gulu la Hematology & Stem Cell Transplant ku yunivesite ya Illinois ku Chicago's Hematology/Oncology Department - atsogoleri omwewo omwe anakana pempho la amayi anga - kuti atenge malo athu. M'chaka chonse cha 2019, ndagwira ntchito limodzi ndi namwino wotsogolera (NP) kuti ndiwonetsetse kuti mlongo wanga akupezekapo pamisonkhano yake ya miliyoni ndi imodzi yomwe ingamuyeze momwe angathere kuti amulandire. Mu 2020, ndidalandira foni kuchokera kwa said NP yemwe, misozi yachimwemwe, adandifunsa ngati ndikufuna kukhala wopereka ma cell a mlongo wanga. Komanso mu 2020, ndidapereka ma stem cell anga, zomwe sindikanatha kuchita mpaka zaka zingapo zapitazo chifukwa chongokhala theka, kenako ndikubwerera kumapiri omwe ndimawakonda. Ndipo mu 2021, patatha chaka chimodzi atapereka, thupi lake linali litavomereza kwathunthu maselo - omwe adabwera ndi sitampu yachipatala yotsimikizira. Masiku ano, Amy wamasulidwa ku matenda a sickle cell ndipo amakhala moyo monga mmene ankadzionera. Kwa nthawi yoyamba.

Ndikuthokoza Colorado Access chifukwa cha mwayi wolemba za sickle cell muzochitika zabwino - kwa nthawi yoyamba. Kwa omwe ali ndi chidwi, omasuka dinani ulalo womwe uli pansipa kuti mumve nkhani za mlongo wanga ndi amayi, kuchokera komwe kumachokera.

https://youtu.be/xGcHE7EkzdQ

Zothandizira

1. Mainous AG III, Tanner RJ, Harle CA, Baker R, Shokar NK, Hulihan MM. Maganizo pa Kusamalira Matenda a Sickle Cell ndi Zovuta Zake: Kafukufuku Wadziko Lonse wa Madokotala Ophunzitsa Banja. 2015;853835:1-6.
2. Haywood C Jr, Tanabe P, Naik R, Beach MC, Lanzkron S. Zotsatira za Race ndi Matenda pa Sickle Cell Odwala Oyembekezera Nthawi mu Dipatimenti Yowopsa. Ndine J Emerg Med. 2013;31(4):651-656.
3. Gibson, GA. Martin Center Sickle Cell Initiative. Sickle Cell Disease: The Ultimate Health Diparity. 2013. Akupezeka ku: http://www.themartincenter.org/docs/Sickle%20Cell%20Disease%20 The%20Ultimate%20Health%20Disparity_Published.pdf.
4. Nelson SC, Hackman HW. Mitundu Yambiri: Malingaliro a Mtundu ndi Tsankho mu Sickle Cell Center. Mankhwala a khansa ya magazi. 2012; 1-4.
5. Haywood C Jr, Tanabe P, Naik R, Beach MC, Lanzkron S. Zotsatira za Race ndi Matenda pa Sickle Cell Odwala Oyembekezera Nthawi mu Dipatimenti Yowopsa. Ndine J Emerg Med. 2013;31(4):651-656.
6. Brandow, AM & Panepinto, JA Hydroxyurea Gwiritsani Ntchito mu Sickle Cell Disease: Nkhondo Yokhala ndi Mitengo Yotsika ya Mankhwala, Kusatsatiridwa Kwambiri kwa Odwala, ndi Mantha a Poizoni ndi Zotsatira zake. Katswiri Rev Hematol. 2010;3(3):255-260.