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Watan Fadakarwar Sikila

By Wivin N

Lokacin da aka nemi in rubuta bulogi kan cutar sikila (SCD) don Watan Fadakarwa da Sikila, na yi farin ciki kuma na wuce wata. A ƙarshe - ana neman in rubuta akan wani batu wanda mai yiwuwa ya mamaye mafi yawan sarari a cikin zuciyata. Amma gaskiya, na ɗauki lokaci mai tsawo kafin in zauna in yi tunani a takarda. Ta yaya zan isar da motsin zuciyar da ke tattare da kallon yadda ake ƙi ƙaunataccen ƙaunataccena a ƙofar asibiti lokacin da aka zana kukan wahala mai shiru tare da tsinkayen kulawa? A ina ne mutum zai fara lokacin da suke son ilmantar da masu sauraro gaba ɗaya game da wani abu mai raɗaɗi da gaske wanda kaddara ta auri wasu daga cikin mu - masu sauraron da wataƙila ba za su taɓa gani ko jin tasirin sa a bayan kofofin makwabta ba. Ta yaya zan furta wahalar uwa? Wani kauye da ya rage da yaro daya don reno? Shin ta hanyar dogon aiki ne kawai a rubuce daga kwas ɗin Jagora na Kiwon Lafiyar Jama'a inda aka sami damar yin taswirar taswira da yawa game da yadda halaye marasa kyau da ɗabi'un masu badawa ga majiyyata masu SCD, ɓata halaye na neman kulawar marasa lafiya, da rashin tabbas kan yadda ake bi da Baƙar fata. /Majinyatan Amurkawa na Afirka suna kaiwa zuwa asibiti akai-akai ko kuma yawan bayyanar cututtuka? Wanne yana haifar da ƙarin haɗari, mita, da tsananin rikitarwa na SCD? Wanne zai iya haifar da kowane nau'in ingancin rayuwa, gami da mutuwa?

Rambling da tunani da ƙarfi yanzu.

Amma, watakila zan iya nuna bincike na a kusa da lokacin da na samu kuma na sake nazarin bayanan likita na mutanen da ke zaune tare da cutar sikila a Colorado don sanin ko yin amfani da kulawar ketamine mai tasiri yana rage yawan adadin opioid sau da yawa da ake buƙata / buƙata a cikin mummunan rikicin ciwon sikila. . Ko shekaru na a cikin dakin gwaje-gwaje, ƙera polypeptides na roba a matsayin tsarin rigakafin ciwon sikila wanda zai ƙara alaƙar jini ga iskar oxygen. Har ma na yi tunani game da rubuce-rubuce a kan wasu bayanai marasa adadi da na koya a cikin karatuna na MPH, kamar yadda likitocin likitancin iyali ba su da daɗi da sarrafa SCD, a wani ɓangare saboda yin hulɗa da ƴan Afirka Ba'amurke.1 - ko kuma yadda wani yanki mai ban sha'awa, nazarin kwatancen Binciken Kula da Kiwon Lafiya na Asibitin Ƙasa tsakanin 2003 da 2008 ya nuna cewa marasa lafiya Ba'amurke da ke da SCD sun sami lokacin jira wanda ya fi 25% tsayi fiye da Samfurin Majinyata na Janar.2

Gaskiyar kwayar cutar sikila daya da na san ina son rabawa ita ce - bambance-bambancen kudade na sikila idan aka kwatanta da sauran cututtuka sananne ne. An bayyana wannan a wani bangare ta hanyar babban gibi da ke akwai a cikin masu zaman kansu da kudade na jama'a don bincike na asibiti tsakanin cututtuka da ke damun baki da fararen fata a kasarmu.3 Misali, cystic fibrosis (CF) cuta ce ta kwayoyin halitta wacce ke shafar mutane kusan 30,000, idan aka kwatanta da 100,000 da SCD suka shafa.4 Daga wata mahanga ta daban, kashi 90% na mutanen da ke zaune tare da CF farare ne yayin da kashi 98% na masu fama da cutar sikila baki ne.3 Kamar SCD, CF shine babban abin da ke haifar da cututtuka da mace-mace, yana tsananta da shekaru, yana buƙatar tsauraran tsarin magunguna, yana haifar da asibiti na wucin gadi, kuma yana rage tsawon rayuwa.5 Kuma duk da wannan kamanceceniya, akwai babban bambamci wajen tallafawa kudade tsakanin waɗannan cututtuka guda biyu, inda CF ta karɓi kuɗin gwamnati sau huɗu daga Cibiyar Kiwon Lafiya ta ƙasa (dala miliyan 254) idan aka kwatanta da SCD ($ 66 miliyan).4,6

Yayi nauyi sosai. Bari in koma in fara da mahaifiyata.

Mahaifiyata ’yar gudun hijira ce daga Jamhuriyar Dimokaradiyyar Kongo wadda ta yi shekaru ashirin da biyu na farkon rayuwarta a Normal, Illinois tana gyaran gashi. Kyawun kyawunta na tsakiyar-Afrika, haɗe tare da ƙwararrun dabarun yatsanta da kuma kyakkyawar ido don kamala, cikin sauri ya sanya ta zama sanannen tafi-da-fukan gashi ga al'ummomin Ba'amurke na Afirka a yankin Bloomington-Al'ada tsawon shekaru. Alƙawari ɗaya yakan ɗauki sa'o'i da yawa a lokaci guda kuma mahaifiyata tana jin Turanci kaɗan. Don haka a zahiri, ta taka rawar sauraro yayin da abokan cinikinta ke ba da labari game da rayuwarsu da na 'ya'yansu. Wani jigo mai maimaitawa wanda sau da yawa ya ba ni sha'awa yayin da nake zaune a kusurwar launi ko yin aikin gida na gabaɗaya shine rashin amana da ƙima ga Cibiyar Kiwon Lafiya ta Advocate BroMenn, babban asibiti a yankin Bloomington-Normal. Wannan asibiti da alama yana da mummunan wakilci a cikin al'ummar Amurkawa na Afirka don abin da za a iya kwatanta shi a zahiri a matsayin mai ba da ra'ayi mara kyau da kulawar al'adu. Amma, abokan hulɗar mahaifiyata sun kasance masu bakin ciki a cikin asusun su kuma suna kiran abin da yake - wariyar launin fata. Kamar yadda ya fito, wariyar launin fata ɗaya ce kawai daga cikin abubuwan da ke ba da kiwon lafiya da yawa waɗanda suka haifar da waɗannan ra'ayoyin; wasu sun haɗa da sakaci, son zuciya, da son zuciya.

Sakaci ya sa 'yar uwata ta shiga suma ta kwana 10 tana da shekara 8. Rashin son zuciya da rashin kulawa ya sa ta daina karatun kusan shekara biyu a karshen makarantar sakandare. Bias (kuma a iya cewa, rashin cancantar likitocin kiwon lafiya) ya haifar da bugun jini guda ɗaya a cikin shekaru 21 da kuma wani tasiri a gefe guda yana da shekaru 24. Kuma wariyar launin fata ya hana ta samun kyakkyawan magani daga wannan cuta da take bukata kuma tana so. .

Har zuwa yanzu, miliyoyin kalmomin da na sanya a takarda game da duk wani abu da ke da alaƙa da sikila sun samo asali ne a koyaushe game da yanayin cuta, baƙin ciki, wariyar launin fata, rashin kulawa, da mutuwa. Amma abin da na fi yabawa game da lokacin wannan post ɗin - game da kasancewarsa Watan Faɗakarwar Cutar Sikila a cikin shekara ta 2022 - shine cewa a ƙarshe ina da wani abu mai ban mamaki da zan rubuta akai. Na yi shekaru da yawa ina bin shugabannin maganin sikila da bincike. Na yi tafiya don koyo daga mafi kyawu, na tsara tushen ilimin hanyoyin da zan sauƙaƙa jinyar ƙanwata da dawo da ita gida. A cikin 2018, na bar Colorado don zama kusa da 'yar'uwata a Illinois. Na sadu da shugabannin bincike na ƙungiyar Hematology & Stem Cell Transplant a Jami'ar Illinois a Sashen Hematology/Oncology na Chicago - shugabannin da suka yi watsi da roƙon mahaifiyata - don neman sararin samaniya. A cikin shekarar 2019, na yi aiki kafada da kafada da wata shugabar ma'aikaciyar jinya (NP) don taimakawa wajen tabbatar da cewa 'yar'uwata ta halarci alƙawuranta na miliyan da ɗaya wanda zai auna yuwuwarta don samun dashewa. A cikin 2020, na sami kiran waya daga NP wanda, tare da hawaye mai farin ciki, ya tambaye ni ko ina so in zama mai ba da gudummawar wayar kanwata. Hakanan a cikin 2020, na ba da gudummawar ƙwayoyin jikina, abin da ba zan iya yi ba har sai shekaru biyu da suka wuce saboda kasancewar wasan rabin wasa kawai, sannan na koma kan tsaunukan da nake so. Kuma a cikin 2021, shekara guda bayan gudummawar, jikinta ya karɓi cikakkiyar ƙwayoyin ƙwayoyin cuta - waɗanda suka zo tare da tambarin likita na tabbatarwa. A yau, Amy ta rabu da cutar sikila da rayuwarta kamar yadda ta zaci kanta. A karon farko.

Ina godiya ga Colorado Access don damar da zan rubuta game da sikila a cikin yanayi mai kyau - a karon farko. Ga masu sha'awar sai ku latsa wannan link dake kasa domin jin tatsuniyar kanwata da mahaifiyata, kai tsaye daga majiyar mu.

https://youtu.be/xGcHE7EkzdQ

References

  1. Mainous AG III, Tanner RJ, Harle CA, Baker R, Shokar NK, Hulihan MM. Halayen Gudanar da Ciwon Sikila da Matsalolinsa: Binciken Likitocin Iyali na Ilimi na ƙasa. 2015; 853835: 1-6.
  2. Haywood C Jr, Tanabe P, Naik R, Beach MC, Lanzkron S. Tasirin Race da Cututtuka akan Lokacin Jiran Marasa Lafiya na Sikila a Sashen Gaggawa. Am J Emerg Med. 2013;31(4):651-656.
  3. Gibson, GA Martin Center Sickle Cell Initiative. Ciwon Sikila: Ƙarshen Bambancin Lafiya. 2013. Akwai daga: http://www.themartincenter.org/docs/Sickle%20Cell%20Disease%20 The%20Ultimate%20Health%20Disparity_Published.pdf.
  4. Nelson SC, Hackman HW. Al'amuran Race: Ra'ayin Kabilanci da Wariyar launin fata a Cibiyar Sikila. Cutar Ciwon Mara na Pediatr. 2012; 1-4.
  5. Haywood C Jr, Tanabe P, Naik R, Beach MC, Lanzkron S. Tasirin Race da Cututtuka akan Lokacin Jiran Marasa Lafiya na Sikila a Sashen Gaggawa. Am J Emerg Med. 2013;31(4):651-656.
  6. Brandow, AM & Panepinto, JA Hydroxyurea Amfani a Cutar Sikila: Yaƙi tare da Rawanin Ma'auni na Rubutu, Rashin Yarda da Marasa Lafiya, da Tsoron Guba da Tasirin Side. Kwararre Rev Hematol. 2010;3(3):255-260.