Please ensure Javascript is enabled for purposes of website accessibility E lele i ka papa kuhikuhiE maʻiʻo
En Español
A A
800-511-5010
Ke hoʻi nei ka Health First Colorado a me CHP + i nā kaʻina hana hou.
E nānā i kāu leka uila, leka uila, a me PEAK inbox. E hana i ka wā e loaʻa ai nā leka kūhelu. Hiki iā ʻoe ke ʻike i kāu lā hou maanei i kekahi manawa. Inā loaʻa iā ʻoe kahi ʻeke hōʻano hou, e hōʻoia e hoʻopiha. E hōʻoia hoʻi e kau inoa a hoʻihoʻi mai i ka lā kūpono.
E aʻo hou maʻaneʻi

Mahina Hoʻomaʻamaʻa Sickle Cell

By ʻO Wivine N

I ka noi ʻia ʻana iaʻu e kākau i kahi moʻomanaʻo moʻomanaʻo e pili ana i ka sickle cell disease (SCD) no ka Sickle Cell Awareness Month, ua hauʻoli wau a ma luna o ka mahina. ʻO ka hope - ke noi ʻia nei e kākau ma kahi kumuhana e noho nui ana i loko o koʻu puʻuwai. Akā ʻoiaʻiʻo, lōʻihi ka lōʻihi o koʻu noho ʻana i lalo a kau i ka manaʻo i ka pepa. Pehea wau e hōʻike ai i nā manaʻo e hiki mai ana me ka nānā ʻana i kahi mea aloha e hōʻole ʻia ma ka puka o ka haukapila i ka wā i pena ʻia ai nā leo o ka ʻeha leo me nā manaʻo o ka wehe ʻana i ka nānā? Ma hea kahi e hoʻomaka ai inā makemake lākou e aʻo i ka lehulehu e pili ana i kekahi mea ʻeha loa a ka hopena e mare ai i kekahi o mākou - kahi anaina kahi e ʻike ʻole ai ka hapa nui i kona hopena ma hope o nā pani pani o kahi hoalauna. Pehea wau e ʻōlelo ai i ka ʻeha o ka makuahine? He kauhale i haʻalele me hoʻokahi keiki liʻiliʻi e hānai? Ma o kahi hana lōʻihi i kākau ʻia mai kahi papa Master of Public Health kahi i loaʻa ai ka manawa kūpono e wehewehe nui i ka ʻano o nā ʻano a me nā ʻano o ka mea hoʻolako maikaʻi ʻole i ka poʻe maʻi me ka SCD, nā stigmatization o nā ʻano ʻimi mālama maʻi, a me ka maopopo ʻole o ka mālama ʻana i ka ʻeleʻele. / ʻO nā poʻe maʻi ʻAmelika ʻAmelika e alakaʻi i nā hale hoʻokipa pinepine a i ʻole ka hōʻike nui ʻana o nā hōʻailona? He aha ka mea e hoʻonui ai i ka pilikia, ka pinepine, a me ka paʻakikī o nā pilikia SCD? He aha ka mea hiki ke alakaʻi i nā ʻano hōʻailona o ke ola, me ka make?

ʻO Rambling a noʻonoʻo nui i kēia manawa.

Akā, hiki paha iaʻu ke hōʻike i kaʻu noiʻi a puni i ka wā i loaʻa ai iaʻu a loiloi i ka ʻikepili moʻokalaleo olakino o nā poʻe e noho ana me ka maʻi sickle cell ma Colorado e hoʻoholo ai i ka hoʻohana ʻana i ka hoʻohana ʻana i ke ketamine maikaʻi e hōʻemi i nā koina opioid kiʻekiʻe i koi pinepine ʻia / noi ʻia i kahi pilikia ʻeha ʻeha. . A i ʻole koʻu mau makahiki i loko o kahi keʻena hana, e hana ana i nā polypeptides synthetic ma ke ʻano he anti-sickling e hoʻonui ai i ka pili o ke koko no ka oxygen. Ua noʻonoʻo wau e kākau i nā ʻike ʻē aʻe he nui aʻu i aʻo ai i kaʻu mau haʻawina MPH, e like me ka ʻoluʻolu ʻole o nā kauka lapaʻau ʻohana i ka mālama ʻana iā SCD, ma kahi hapa no ka launa pū ʻana me nā poʻe ʻAmelika ʻAmelika.1 - a i ʻole pehea e hōʻike ʻia ai kahi ʻāpana cross-sectional, hoʻohālikelike hoʻohālikelike o ka National Hospital Ambulatory Medical Care Survey ma waena o 2003 a me 2008 i hōʻike i nā poʻe maʻi ʻAmelika me SCD i ʻike i nā manawa kali he 25% ka lōʻihi ma mua o ka General Patient Sample.2

ʻO kekahi mea ʻoiaʻiʻo o ka sickle cell aʻu i ʻike makemake ai e kaʻana like - ʻo ka ʻokoʻa kālā no ka cell sickle i hoʻohālikelike ʻia me nā maʻi ʻē aʻe. Ua wehewehe ʻia kēia ma ka hapa nui e loaʻa ana i ke kālā pilikino a me ka lehulehu no ka noiʻi lapaʻau ma waena o nā maʻi e pili ana i ka heluna ʻeleʻele a me ke keʻokeʻo ma ko mākou ʻāina.3 No ka laʻana, ʻo ka cystic fibrosis (CF) kahi maʻi maʻi e pili ana ma kahi o 30,000 mau kānaka, hoʻohālikelike ʻia me 100,000 i hoʻopilikia ʻia e SCD.4 Mai kahi hiʻohiʻona ʻē aʻe, 90% o ka poʻe e noho ana me CF he keʻokeʻo a ʻo 98% o ka poʻe e noho ana me SCD he ʻeleʻele.3 E like me SCD, he kumu nui ka CF o ka maʻi a me ka make, ʻoi aku ka nui o ka makahiki, koi i nā lāʻau lapaʻau koʻikoʻi, ka hopena i nā hale hoʻokipa intermittent, a hoʻemi i ke ola.5 A ʻoiai ʻo kēia mau mea like, nui ka ʻokoʻa i ke kālā kākoʻo ma waena o kēia mau maʻi ʻelua, me ka loaʻa ʻana o CF i ʻehā mau manawa o ka nui o ke kālā aupuni mai ka National Institutes of Health ($254 miliona) i hoʻohālikelike ʻia me SCD ($66 miliona).4,6

Kaumaha loa. E hoʻi au i hope a hoʻomaka me koʻu makuahine.

ʻO koʻu makuahine he malihini ʻApelika mai ka Democratic Republic of Congo i hoʻohana i nā makahiki he iwakāluakūmālua o kona ola ma Normal, Illinois i ka ulana lauoho. ʻO kāna mau mea hoʻonaninani waena-ʻApelika, i hui pū ʻia me kāna mau ʻenehana manamana lima a me ka makaʻala no ka hemolele, ua hoʻolilo koke iā ia i mea lauoho lauoho kaulana no nā kaiāulu ʻAmelika ʻAmelika ma Bloomington-Normal wahi no nā makahiki. Hoʻokahi manawa i lawe pinepine ʻia i kekahi mau hola i ka manawa a ʻōlelo liʻiliʻi koʻu makuahine i ka ʻōlelo Pelekania. No laila, hoʻokani ʻo ia i ka hoʻolohe ʻana i ka haʻi ʻana o kāna mau mea kūʻai aku i nā moʻolelo e pili ana i ko lākou ola a me kā lākou mau keiki. ʻO kahi kumumanaʻo e hoʻopiʻi pinepine iaʻu i koʻu noho ʻana ma ke kihi o ke kala a i ʻole ka hana ʻana i kaʻu haʻawina home, he hilinaʻi nui a hoʻowahāwahā ʻia no Advocate BroMenn Medical Center, ka haukapila nui loa ma Bloomington-Normal. Me he mea lā ua hewa ʻole kēia haukapila i ke kaiāulu ʻAmelika ʻAmelika no ka mea i ʻike ʻia ma ke ʻano he mea hoʻolako implicit biases a me ka mālama pono ʻole. Akā, ʻo nā mea kūʻai aku o koʻu makuahine ua palaka loa i kā lākou moʻolelo a kapa ʻia ʻo ia no ke ʻano o ia - racism. E like me ka mea i ʻike ʻia, ʻo ka racism kekahi o nā kumu mālama ola olakino i hoʻokumu i kēia mau manaʻo; ʻO nā mea ʻē aʻe e pili ana i ka mālama ʻole, ka manaʻo ʻole, a me ka manaʻoʻiʻo.

Ua haʻalele ʻo Neglect i koʻu kaikuahine i loko o kahi coma 10-lā i ka makahiki 8. ʻO ka manaʻo ʻino a me ka mālama ʻole ʻana i kumu ʻole ai ʻo ia i ʻelua makahiki o ka hoʻonaʻauao ʻana ma ka pau ʻana o ke kula kiʻekiʻe. ʻO Bias (a me ka hoʻopaʻapaʻa ʻana, ʻaʻohe mākaukau o nā mea lapaʻau) alakaʻi i hoʻokahi hahau i ka makahiki 21 a ʻo kekahi i hoʻopilikia i kēlā ʻaoʻao i ka makahiki 24. .

A hiki i kēia manawa, ua hoʻokumu mau ʻia nā miliona o nā huaʻōlelo aʻu i waiho ai i ka pepa e pili ana i nā mea e pili ana i ke kelepona ʻokiwi e pili ana i ka pōʻaiapili o ka maʻi, ke kaumaha, ka hoʻokalakupua, ka mālama maikaʻi ʻole, a me ka make. Akā ʻo kaʻu mea e mahalo nui ai i ka manawa o kēia pou blog - e pili ana iā Sickle Cell Awareness Month i ka makahiki 2022 - ʻo ia kaʻu i loaʻa ai kahi mea kupanaha loa e kākau ai. No nā makahiki, ua hahai au i nā alakaʻi o ka mālama ʻana a me ka noiʻi. Ua huakaʻi au e aʻo mai nā mea maikaʻi loa, e hoʻonohonoho i kahi kumu ʻike o nā ala e hoʻomaʻamaʻa ai i ka mālama ʻana o koʻu kaikuahine a hoʻihoʻi mai i ka home. I ka makahiki 2018, ua haʻalele au iā Colorado e noho kokoke i koʻu kaikuahine ma Illinois. Ua hui au me nā alakaʻi noiʻi o ka hui Hematology & Stem Cell Transplant ma ke Kulanui o Illinois ma Chicago's Hematology/Oncology Department - nā alakaʻi like i hōʻole i ka noi a koʻu makuahine - e koi i ko mākou wahi. I ka makahiki 2019, ua hana pili au me kahi kahu kahu alakaʻi (NP) e kōkua i ka hele ʻana o koʻu kaikuahine i kāna mau koho miliona a hoʻokahi e ana i kona hiki ke loaʻa i kahi transplant. I ka makahiki 2020, ua loaʻa iaʻu kahi kelepona mai ʻōlelo ʻia ʻo NP nāna, me ka waimaka hauʻoli, ua nīnau mai inā makemake wau e lilo i mea hāʻawi pū i koʻu kaikuahine. I ka makahiki 2020, ua hāʻawi aku au i kaʻu mau puʻupuʻu stem, kahi mea hiki ʻole iaʻu ke hana a hiki i ʻelua mau makahiki ma mua ma muli o ka hapalua wale nō, a laila hoʻi i nā mauna aʻu i aloha ai. A i ka makahiki 2021, hoʻokahi makahiki ma hope o ka hāʻawi ʻana, ua ʻae piha kona kino i nā cell stem - i hele mai me kahi hōʻailona hōʻoia. I kēia lā, ua kaʻawale ʻo Amy mai kāna maʻi maʻi sickle cell a me ke ola ola e like me kāna i manaʻo ai nona iho. I ka manawa mua loa.

Mahalo wau iā Colorado Access no ka manawa e kākau ai e pili ana i ka sickle cell i loko o ka pōʻaiapili maikaʻi - no ka manawa mua. No ka poʻe hoihoi, e ʻoluʻolu e kaomi i ka loulou ma lalo nei e lohe i nā moʻolelo a koʻu kaikuahine a me koʻu makuahine, pololei mai ke kumu mai.

https://youtu.be/xGcHE7EkzdQ

E hoʻomaopopo '

  1. Mainous AG III, Tanner RJ, Harle CA, Baker R, Shokar NK, Hulihan MM. ʻO nā manaʻo e pili ana i ka mālama ʻana i ka maʻi maʻi maʻi a me kona mau pilikia: He National Survey of Academic Family Physicians. 2015;853835:1-6.
  2. Haywood C Jr, Tanabe P, Naik R, Beach MC, Lanzkron S. ʻO ka hopena o ka lāhui a me ka maʻi ma luna o nā manawa kali o ka maʻi maʻi maʻi ma ka Oihana Hoʻopilikia. Am J Emerg Med. 2013;31(4):651-656.
  3. Gibson, GA. Martin Center Sickle Cell Initiative. ʻO ka maʻi maʻi maʻi: ka ʻokoʻa o ke ola kino. 2013. Loaʻa mai: http://www.themartincenter.org/docs/Sickle%20Cell%20Disease%20 The%20Ultimate%20Health%20Disparity_Published.pdf.
  4. Nelson SC, Hackman HW. Nā mea e pili ana i ka Lahui: Nā Manaʻo o ka Lahui a me ka Racism i loko o kahi Sickle Cell Center. Ma Ke Kanesa Kanaloa Pediatr. 2012;1-4.
  5. Haywood C Jr, Tanabe P, Naik R, Beach MC, Lanzkron S. ʻO ka hopena o ka lāhui a me ka maʻi ma luna o nā manawa kali o ka maʻi maʻi maʻi ma ka Oihana Hoʻopilikia. Am J Emerg Med. 2013;31(4):651-656.
  6. Brandow, AM & Panepinto, JA Hydroxyurea Hoʻohana i ka Sickle Cell maʻi: ʻO ke kaua me nā uku haʻahaʻa o ka palapala kuhikuhi, ka hoʻokō pono ʻole o ka maʻi, a me ka makaʻu i nā mea ʻawaʻawa a me nā hopena ʻaoʻao. Kaukau Rev Hematol. 2010;3(3):255-260.