{"id":15584,"date":"2021-05-20T18:44:57","date_gmt":"2021-05-20T18:44:57","guid":{"rendered":"https:\/\/lpfch.org\/meet-david-your-summer-scamper-patient-hero\/"},"modified":"2024-07-01T21:46:00","modified_gmt":"2024-07-01T21:46:00","slug":"meet-david-your-summer-scamper-patient-hero","status":"publish","type":"post","link":"http:\/\/lpfch.org\/tl\/impact-stories\/meet-david-your-summer-scamper-patient-hero\/","title":{"rendered":"Kilalanin si David, ang Iyong Bayani ng Pasyenteng Scamper sa Tag-init"},"content":{"rendered":"<p>&nbsp;<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">&quot;Hindi naman nakakatakot sa akin ang ma-ospital. Hindi na ako nakakatakot na magkaroon ng bagong problema dahil maraming beses na itong nangyari. Ewan ko ba, parang hindi ako masyadong gusto ng dugo ko.&quot;<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">Sa edad na 15, si David ay naninirahan sa loob at labas ng Lucile Packard Children&#039;s Hospital Stanford kaya naipaliwanag niya ang kanyang sickle cell disease, isang minanang red blood disorder, na mas mahusay kaysa sa sinuman.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">&quot;Ang iyong mga pulang selula ay dapat na bilog at may oxygen sa mga ito. Ang sa akin ay hugis kalahating buwan, hugis karit, kaya naman tinawag itong sickle cell, kaya hindi ako nakakakuha ng parehong dami ng oxygen,&quot; sabi ni David sa 2019 Netflix documentary na &quot;Human Nature&quot; ni Adam Bolt.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">&quot;Madalas itong tinatawag na unang molecular disease. Ito ay sanhi ng isang solong pagbabago sa DNA sequence,&quot; paliwanag ni Matt Porteus, MD, PhD, Sutardja Chuk Propesor ng Definitive at Curative Medicine sa Stanford University. \u201cIto ay ang letrang &#039;A&#039; na pinalitan ng letrang &#039;T.&#039; Ito ay nagiging napakatigas, at hindi ito makakapit at hindi mo makukuha ang mga pulang selula ng dugo sa mga tisyu kung saan maaari silang maghatid ng oxygen Kapag hinarangan mo ang kakayahan ng oxygen na makarating sa mga tisyu na iyon, ang mga tisyu na iyon ay hindi gagana nang maayos, at sila ay masisira.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">Sa kasalukuyan, ang pag-asa sa buhay para sa isang pasyente na may sickle cell disease ay 42-47 taon lamang. Iyon ay 42-47 taon na puno ng dialysis, matinding sakit, at panganib ng mga stroke at organ failure. Gayunpaman, ang mga panganib na ito ay hindi nakapigil kay David sa pagiging isang bata. Hindi siya mapipigilan sa pinakamamahal niya: ang paglalaro ng basketball.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">\u201cParang pumipintig,\u201d sabi ni David tungkol sa sakit. &quot;Maaari akong magkaroon ng isang maliit na krisis sa sakit kung saan ito ay talagang hindi binibilang, at pagkatapos ay maaari akong magkaroon ng isang bagay na talagang masama. Ngunit hindi ako basta-basta maglalaro ng basketball. Hindi ka maaaring hindi na lang maglaro ng basketball.&quot;<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">Ngunit ngayon ay may pag-asa para sa higit pang mga bata tulad ni David. Ginagamit ni Dr. Porteus ang CRISPR, isang rebolusyonaryong tool sa pag-edit ng gene, upang bumuo ng lunas para sa mga sakit tulad ng sickle cell disease.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">&quot;Wala lang kaming mga tool, para baguhin ang isang letrang iyon sa tumpak na paraan\u2014lalo na ang isang letra. Bago ang CRISPR, nakakakuha kami ng 1-2% correction. Umabot na kami ngayon sa 50-80% ng mga cell,&quot; excited na sabi ni Dr. Porteus. &quot;Maaari talaga itong gumana. Ito ay talagang makakapagpagaling ng isang pasyente. Mayroon kaming kadalubhasaan na gawin iyon lahat dito. Mayroon kaming imprastraktura kasama ang 5th floor ng Lucile Packard Children&#039;s Hospital upang gamutin ang mga pasyenteng ito.&quot;<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">Kamakailan, sinurpresa ni David si Dr. Porteus sa pamamagitan ng isang video call upang makibalita at magpasalamat sa kanya para sa kanyang trabaho upang makahanap ng lunas.<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">&quot;Ang ospital ay naging pangalawang tahanan sa akin, at talagang kakaiba ang pakiramdam na sabihin ngunit ang ilan sa aking mga paboritong tao na nakilala ko sa pamamagitan ng ospital o nagtatrabaho doon,&quot; sabi ni David. &quot;At hindi ko na kailangang kilalanin sila, kaya kong magsalita para sa lahat ng iba pang mga taong may sickle cell, at karaniwang lahat ng sakit. Salamat, Dr. Porteus.&quot;<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">&quot;Talagang pinahahalagahan ko iyon,&quot; sagot ni Dr. Porteus. &quot;Ngunit ituturo ko rin na ito ay talagang isang malaking grupo sa atin na lahat ay bahagi niyan. Ang mga bagay na tulad nito ay hindi nangangailangan ng isang tao. Ito ay nangangailangan ng isang buong pangkat ng mga tao, at mayroon kang isang buong pangkat ng mga tao sa likod mo, at palagi kang mayroong isang buong pangkat ng mga tao sa likod mo.&quot;<\/p>\n<p class=\"\" style=\"white-space: pre-wrap;\">Salamat sa pagiging bahagi ng pangkat ni David. Si David ay patuloy na tumatanggap ng paggamot sa aming ospital (bagaman ngayon na siya ay 18 taong gulang, siya ay magtatapos sa Stanford Hospital sa lalong madaling panahon!) at ipinagmamalaki ang Scamper bilang suporta sa iba pang mga pasyente, kanyang pangkat ng pangangalaga, at mga makabagong mananaliksik tulad ni Dr. Porteus. Maaaring magkalayo tayo, ngunit gaya ng sabi ni David, \u201chindi mo pwedeng hindi lang si Scamper.\u201d<\/p>","protected":false},"excerpt":{"rendered":"<p>&nbsp; &quot;Hindi nakakatakot sa akin ang ma-ospital. Ang pagkakaroon ng bagong problema ay hindi na nakakatakot sa akin dahil maraming beses na itong nangyari. Ako\u2026<\/p>","protected":false},"author":17,"featured_media":17743,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[23],"class_list":["post-15584","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-summer-scamper-heroes"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.3 (Yoast SEO v27.3) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Meet David, Your Summer Scamper Patient Hero - Lucile Packard Foundation for Children&#039;s Health<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"http:\/\/lpfch.org\/tl\/impact-stories\/meet-david-your-summer-scamper-patient-hero\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Meet David, Your Summer Scamper Patient Hero\" \/>\n<meta property=\"og:description\" content=\"&nbsp; \u201cBeing in the hospital isn\u2019t scary to me. 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