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Mwedzi Wekuzivisa Masero eSickle

Pandakakumbirwa kuti ndinyore chinyorwa cheblog chechirwere chesickle cell (SCD) cheMwedzi Wekuzivisa Sero, ndakafara nepamusoro pemwedzi. Pakupedzisira - kukumbirwa kunyora pamusoro pechinyorwa chingangove chine nzvimbo yakanyanya mumoyo mangu. Asi sezvinobvumwa, zvakatora nguva refu kuti ndigare pasi ndokuisa pfungwa papepa. Ndinotaura sei manzwiro anouya nekuona mudikanwi achirambwa pamusuwo wechipatara apo kuchema kwekutambura chinyararire kunopedzwa nemafungiro ekugadzirisa pfungwa? Munhu anotangira papi pavanenge vachida kudzidzisa vateereri vakaungana nezve chimwezve chinhu chinorwadza icho chinozorooresa vamwe vedu - vateereri vanobva kune vangasamboona kana kunzwa kukanganisa kuseri kwemasuo akavharwa emuvakidzani. Ndinotaura sei kutambura kwaamai? Musha wasara nemwana mudiki wekurera? Ingori chete kuburikidza nebasa rakareba rakanyorwa kubva kuMaster of Public Health kosi uko mukana uripo wekutarisa zvakanyanya maitiro asina kunaka evanopa uye maitiro kune varwere vane SCD, kushorwa kwemafambiro ekutsvaga kwevarwere, uye kusava nechokwadi pamusoro pemabatiro eVatema. / Varwere vemuAfrica vekuAmerica vanotungamira kuchipatara kazhinji kana kutaurwa kwezviratidzo? Chii chinotungamira mukuwedzera njodzi, kuwanda, uye kuomarara kweSCD matambudziko? Chii chinogona kutungamira kune ese marudzi emhando yezviratidzo zvehupenyu, kusanganisira rufu?

Kuzeya nekufunga zvinonzwika.

Asi, zvichida ndaigona kuratidza tsvakurudzo yangu yakapoteredza pandakawana uye ndakaongorora rekodhi rekodhi rekodhi revanhu vanorarama nechirwere chesickle cell muColorado kuti vaone kana kushandiswa kwekutonga kweketamine kunobudirira kunoderedza maopioid akawanda anowanzodiwa / anokumbirwa mumatambudziko akaoma ekurwadziwa kwesikisi. . Kana kuti makore angu murabhoritari, ndichigadzira ma polypeptides ekugadzira senzira yekurwisa kurwara inozowedzera hukama hweropa hweokisijeni. Ndakatombofunga nezvekunyora pane zvisingaverengeki zvimwe chokwadi chandakadzidza muzvidzidzo zvangu zveMPH, sekuti varapi vemishonga yemhuri kazhinji havagadzikane nekutonga SCD, muchidimbu nekuda kwekudyidzana nevanhu vemuAfrica vekuAmerica.1 - kana kuti ongororo inonakidza yemuchinjiko, yekuenzanisa yeNational Hospital Ambulatory Medical Care Survey pakati pa2003 na2008 yakaratidza kuti varwere vemuAmerica vane SCD vakawana nguva dzekumirira dzakareba 25% kupfuura General Patient Sample.2

Chimwe chesickle cell chokwadi chandinoziva chandinoda kugovera ndechekuti - misiyano yemari yesickle cell kana ichienzaniswa nezvimwe zvirwere inonyanyozivikanwa. Izvi zvinotsanangurwa muchidimbu nemukaha mukuru uripo mune yakavanzika uye yeruzhinji mari yekutsvagisa kwekiriniki pakati pezvirwere zvinobata Vatema nevachena munyika yedu.3 Semuenzaniso, cystic fibrosis (CF) chirwere chemajini chinokanganisa vanhu vanosvika zviuru makumi matatu, zvichienzaniswa ne30,000 vakabatwa neSCD.4 Kubva mumaonero akasiyana, chikamu che90% chevanhu vari kurarama neCF vachena ukuwo 98% yeavo vari kurarama neSCD vatema.3 Kufanana neSCD, CF ndiyo honzeri huru yehurwere nerufu, inowedzera nezera, inoda kurongeka kwezvinodhaka, inokonzeresa kuchipatara, uye inoderedza hupenyu.5 Uye zvisinei nekufanana uku, pane musiyano mukuru wekutsigira mari pakati pezvirwere zviviri izvi, neCF ichiwana zvakapetwa kana mari yehurumende kubva kuNational Institutes of Health ($254 miriyoni) zvichienzaniswa neSCD ($66 miriyoni).4,6

Kurema. Rega ndidzokere kumashure nditange namhamha.

Amai vangu mutorwa wemuAfrica anobva kuDemocratic Republic of Congo vakapedza makore makumi maviri nemaviri ekutanga ehupenyu hwavo muNormal, Illinois vachiruka vhudzi. Runako rwake rwepakati-muAfrica, rwakasanganiswa nehunyanzvi hwake hwekubatisa zvigunwe uye ziso rakanaka rekukwana, zvakakurumidza kumuita murukwa webvudzi ane mukurumbira wenharaunda dzemuAfrica muBloomington-Normal nharaunda kwemakore. Kusangana kamwe chete kwaiwanzotora maawa akati wandei panguva uye amai vangu vaitaura Chirungu zvishoma. Saka semuzvarirwo, akaita basa rekuteerera apo vatengi vake vaigovana nhoroondo dzehupenyu hwavo uye hwevana vavo. Dingindira raidzokororwa raiwanzondinakidza pandakanga ndakagara mukona ndichipenda kana kuita basa rangu rechikoro rakanga riri rekusavimba uye kusafarira kwaAdvocate BroMenn Medical Center, chipatara chikurusa munzvimbo yeBloomington-Normal. Chipatara ichi chinoratidzika kunge chine mumiriri wakashata munharaunda yemuno yeAfrica America pane zvingangorondedzerwa seanopa rubatsiro rwakarerekera uye nerusaruro rwetsika. Asi, vatengi vaamai vangu vaive vakagomara muakaundi dzavo uye vakazvidaidza kuti ndizvo zvazvaive - rusaruraganda. Sezvazvakazoitika, rusaruraganda rwakanga rwuri chimwe chezvikonzero zvakawanda zvevatapi vehutano izvo zvakaumba maonero aya; dzimwe dzaisanganisira kuregeredza, rusaruro, uye rusaruro.

Kuregeredza kwakasiya hanzvadzi yangu iri pakoma yemazuva gumi pazera remakore 10. Kufungira mano akaipa uye kusava nehanya zvachose kwakamuita kuti apone makore anenge maviri edzidzo paakapedza chikoro chesekondari. Rusarura (uye zviri pachena, kushaikwa kwehunyanzvi hwevanorapa) kwakakonzera sitiroko imwe pazera remakore 8 uye imwe ichikanganisa kune rumwe rutivi pazera remakore 21. Uye rusaruraganda rwakamutadzisa kuwana kurapwa kwekupedzisira kubva kuchirwere ichi chaaida uye chaaida. .

Kusvika parizvino, mamirioni emashoko andakanyora papepa chero chinhu chine chekuita nejeko cell agara akaumbwa maererano nechirwere, kusuwa, rusaruraganda, kusabatwa zvakanaka, uye rufu. Asi chandinonyanya kufarira nezve nguva yeiyi blog positi - nezvekuva Mwedzi Wekuzivisa Sero mugore ra2022 - ndechekuti ini pakupedzisira ndine chimwe chinhu chinoshamisa chekunyora nezvacho. Kwemakore, ndakatevera vatungamiriri vesickle cell kurapwa uye tsvagiridzo. Ndakafamba kuti ndidzidze kubva kune vakanaka, kugadzirisa hwaro hweruzivo rwenzira dzekufambisa kurapwa kwehanzvadzi yangu nekudzosa kumba. Muna 2018, ndakabva kuColorado kunogara pedyo nehanzvadzi yangu kuIllinois. Ndakasangana nevatungamiriri vekutsvagisa veHematology & Stem Cell Transplant timu paYunivhesiti yeIllinois kuChicago's Hematology/Oncology Department - ivo vatungamiriri vamwechete vakaramba chikumbiro chaamai vangu - chekuti titore nzvimbo yedu. Mugore rose ra2019, ndakashanda padhuze nemukoti anotungamira (NP) kubatsira kuona kuti sisi vangu vapinda miriyoni-ne-imwe kugadzwa kwaizoyera kugona kwake kugashira. Muna 2020, ndakatambira runhare kubva kuna NP uyo, nemisodzi yekufara, akabvunza kana ndaida kuve mupiro we cell cell yehanzvadzi yangu. Zvakare muna 2020, ndakapa stem cell dzangu, chimwe chinhu chandaisakwanisa kuita kusvika makore mashoma apfuura nekuda kwekungove hafu yemutambo, ndokubva ndadzokera kumakomo andinoda. Uye muna 2021, gore rimwe chete mushure mekupa, muviri wake wakanga wagamuchira zvizere stem masero - ayo akauya nechitambi chekusimbisa chekurapa. Nhasi, Amy asunungurwa kubva kuchirwere chesickle cell uye hupenyu hwehupenyu sezvaaifungidzira pachake. Kekutanga.

Ndinotenda kuColorado Access nokuda kwemukana wekunyora nezve sickle cell mumamiriro ezvinhu akanaka - kwekutanga. Kune vanoda, sunungukai kudzvanya pa link iri pazasi kuti munzwe nyaya dzehanzvadzi yangu naamai, kubva kwazviri.

https://youtu.be/xGcHE7EkzdQ

References

  1. Mainous AG III, Tanner RJ, Harle CA, Baker R, Shokar NK, Hulihan MM. Maonero kuKutarisira Sickle Cell Chirwere uye Zvinetso Zvacho: Ongororo Yenyika Yevanachiremba Vemhuri Yedzidzo. 2015;853835:1-6.
  2. Haywood C Jr, Tanabe P, Naik R, Beach MC, Lanzkron S. The Impact of Race and Disease on Sickle Cell Patient Wait Times muDhipatimendi reEmergency. Am J Emerg Med. 2013;31(4):651-656.
  3. Gibson, GA. Martin Center Sickle Cell Initiative. Sickle Cell Disease: The Ultimate Health Disparity. 2013. Inowanikwa kubva: http://www.themartincenter.org/docs/Sickle%20Cell%20Disease%20 The%20Ultimate%20Health%20Disparity_Published.pdf.
  4. Nelson SC, Hackman HW. Race Matters: Maonero eRudzi uye Rusaruraganda muSickle Cell Center. Pediatr Blood Cancer. 2012;1-4.
  5. Haywood C Jr, Tanabe P, Naik R, Beach MC, Lanzkron S. The Impact of Race and Disease on Sickle Cell Patient Wait Times muDhipatimendi reEmergency. Am J Emerg Med. 2013;31(4):651-656.
  6. Brandow, AM & Panepinto, JA Hydroxyurea Kushandisa muSickle Cell Disease: Hondo ine Mitemo Yakaderera Yekunyorerwa, Kusateerera Kwemurwere, uye Kutya Kwehuturu uye Maside Effects. Nyanzvi Rev Hematol. 2010;3(3):255-260.