{"id":12091,"date":"2017-09-19T08:33:01","date_gmt":"2017-09-19T14:33:01","guid":{"rendered":"https:\/\/www.uchealth.org\/today\/?p=12091"},"modified":"2023-10-04T11:22:51","modified_gmt":"2023-10-04T17:22:51","slug":"uchealth-takes-aim-at-a-not-so-rare-genetic-disorder","status":"publish","type":"post","link":"https:\/\/www.uchealth.org\/today\/uchealth-takes-aim-at-a-not-so-rare-genetic-disorder\/","title":{"rendered":"UCHealth takes aim at sickle cell, a not-so-rare genetic disorder"},"content":{"rendered":"<div style=\"margin-top: 0px; margin-bottom: 0px;\" class=\"sharethis-inline-share-buttons\" ><\/div><p>&nbsp;<\/p>\n<p>Stephen Lee seems like a typical 28-year-old guy. He likes to hang out with friends, drive his black Mustang GT, and get outside on warm summer days. But one small thing is enough to send him to UCHealth University of Colorado Hospital\u00a0in crippling pain several times a year.<\/p>\n<p>That difference is so small you\u2019d need an electron microscope to see it. On the short arm of his 11<sup>th<\/sup> chromosome, in a gene called HBB, a pair of his genome\u2019s roughly three billion nucleotides are switched around like a battery put in backwards. And so Steven Lee is among the roughly 100,000 people in the United States living with sickle cell disease.<\/p>\n<p>The sickle cell mutation causes the oxygen-carrying hemoglobin molecules in red blood cells to chain together. That chaining can build a sort of tent pole, stretching the red blood cells into the shape of banana or an old sickle for cutting grain before the age of tractors. Such cells die much faster than healthy red blood cells, and the body struggles to replace them, causing anemia. Their sickle shape also helps them glom onto each other as well as the walls of arteries, which causes clotting. That can bring <a href=\"https:\/\/www.nhlbi.nih.gov\/health-topics\/sickle-cell-disease#Signs,-Symptoms,-and-Complications\">all sorts of<\/a> health problems in the short- and long-term. It also hurts \u2013 a lot.<\/p>\n<p>Lee compared it to trying to walk on a bad ankle sprain, one that causes shooting pain with the tiniest amount of pressure. \u201cIt\u2019s like that, but way worse,\u201d he said. \u201cIt can start in one place and can travel through the whole body,\u201d from wrist to elbow to shoulder to chest.<\/p>\n<figure id=\"attachment_12095\" aria-describedby=\"caption-attachment-12095\" style=\"width: 300px\" class=\"wp-caption alignright\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-12095 size-medium\" src=\"https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2017\/09\/19023625\/EXT_09XX17-StephenLee.webp\" alt=\"Portrait of Stephen Lee who has sickle cell disease.\" width=\"300\" height=\"214\" srcset=\"https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2017\/09\/19023625\/EXT_09XX17-StephenLee.webp 1200w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2017\/09\/19023625\/EXT_09XX17-StephenLee-300x214.webp 300w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2017\/09\/19023625\/EXT_09XX17-StephenLee-1024x731.webp 1024w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2017\/09\/19023625\/EXT_09XX17-StephenLee-768x548.webp 768w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2017\/09\/19023625\/EXT_09XX17-StephenLee-150x107.webp 150w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2017\/09\/19023625\/EXT_09XX17-StephenLee-200x143.webp 200w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><figcaption id=\"caption-attachment-12095\" class=\"wp-caption-text\">Stephen Lee works with Kathryn Hassel, MD, and others at UCHealth to help manage his sickle cell disease.<\/figcaption><\/figure>\n<p>He avoids the cold and does what he can to keep things under control. But if that fails, his best option is to head up the road to UCH, where triage in the Emergency Department can lead to an inpatient stay of a solid week. Fortunately, UCH has two major assets to help patients like him.<\/p>\n<h2><strong>A most welcome Hassell<\/strong><\/h2>\n<p>First, the hospital is home to a preeminent\u00a0sickle cell physician: University of Colorado School of Medicine hematologist <a href=\"https:\/\/www.cumedicine.us\/providers\/medicine\/kathryn-hassell\">Kathryn Hassell, MD<\/a>. Second, the hospital is in the middle of an initiative called Sickle Cell Transitions to better understand the needs of sickle cell patients and to help establish better overall care for them.<\/p>\n<p>Hassell, who leads the Colorado Sickle Cell Treatment and Research Center at the CU School of Medicine, has been caring for sickle cell patients at UCH since 1990. The disease\u2019s widespread, complex impacts on the body attracted her scientific interest. It also appealed to her conscience: sickle cell patients were \u2013 and in general remain \u2013 underserved. She estimates she sees roughly 120 of the 150 or so adults with sickle cell disease living in the Rocky Mountain region, both as outpatients in the <a href=\"https:\/\/www.uchealth.org\/locations\/uchealth-hematology-clinic-anschutz\/\">UCH Hematology Clinic<\/a> and as inpatients. (In addition, teams led by foremost UCHealth physicians <a href=\"https:\/\/www.uchealth.org\/provider\/robert-hoyer-md-hematology-and-oncology\/\">Robert Hoyer, MD<\/a>, at UCHealth Memorial Hospital in Colorado Springs and <a href=\"https:\/\/www.uchealth.org\/provider\/steven-r-schuster-md-internal-medicine-medical-oncology\/\">Steven Schuster, MD<\/a>, of UCHealth Cancer Care and Hematology \u2013 Fort Collins see sickle cell patients.)<\/p>\n<p>Though the tools at her disposal are limited \u2013 oxygen, pain management, and blood transfusions are three of the big ones \u2013 Hassell\u2019s experience and her dedication to understanding the nuances of each patient\u2019s particular challenges have earned her much gratitude.<\/p>\n<p>\u201cI love that woman,\u201d Lee said. \u201cShe is epic. I\u2019m so grateful to have her as a doctor.\u201d<\/p>\n<p>In Lee\u2019s case, Hassell crafted a pain management regimen he follows religiously. When he wakes up, he dissolves an anti-nausea pill under his tongue, then takes an oxycodone 30 and an oxycontin 10 with chocolate milk. He\u2019ll taken additional oxycodone during the day and another oxycontin at night.<\/p>\n<p>\u201cShe got it to the point I could function without being drowsy, so I could go on with my life,\u201d Lee said.<\/p>\n<p>There\u2019s still pain, though: as he spoke, he winced as he put a hand to his right knee and extended it, and his back was hurting on this day, too, he said.<\/p>\n<h2><strong>\u2018Transitions\u2019 for improved care<\/strong><\/h2>\n<p>Sickle Cell Transitions emerged in part because Hassell, a blood-disease specialist, has become so central to the general care of so many adults with sickle cell disease. That\u2019s to a degree because children with sickle cell disease tend to have few other health problems, she said.<\/p>\n<p>\u201cThey\u2019ve only ever known their pediatric hematologist because kids don\u2019t need anything else,\u201d she said.<\/p>\n<figure id=\"attachment_12096\" aria-describedby=\"caption-attachment-12096\" style=\"width: 300px\" class=\"wp-caption alignleft\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-12096 size-medium\" src=\"https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2017\/09\/19023735\/EXT_09XX17-Bowden_DelPinoJones.webp\" alt=\"Portrait of Kasey Bowden, left, and Amira Del Pino-Jones, who launched UCHealth's University of Colorado Hospital's Sickle Cell Transitions program.\" width=\"300\" height=\"214\" srcset=\"https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2017\/09\/19023735\/EXT_09XX17-Bowden_DelPinoJones.webp 1200w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2017\/09\/19023735\/EXT_09XX17-Bowden_DelPinoJones-300x214.webp 300w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2017\/09\/19023735\/EXT_09XX17-Bowden_DelPinoJones-1024x731.webp 1024w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2017\/09\/19023735\/EXT_09XX17-Bowden_DelPinoJones-768x548.webp 768w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2017\/09\/19023735\/EXT_09XX17-Bowden_DelPinoJones-150x107.webp 150w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2017\/09\/19023735\/EXT_09XX17-Bowden_DelPinoJones-200x143.webp 200w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><figcaption id=\"caption-attachment-12096\" class=\"wp-caption-text\">Kasey Bowden, left, and Amira Del Pino-Jones launched UCH\u2019s Sickle Cell Transitions program to bridge the gap between providers and patients with sickle cell disease.<\/figcaption><\/figure>\n<p>As sickle cell patients get older, though, health problems familiar to primary care practices crop up more often \u2013 acid reflux, asthma, high blood pressure and such. The idea behind Sickle Cell Transitions is to connect patients like Lee with primary care doctors, with Hassell as a backstop for complicated sickle cell disease-related needs. Another goal of the Transitions effort is to get a better handle on sickle cell patients, who often feel misunderstood in a health care system that sees relatively few of them.<\/p>\n<p>The <a href=\"https:\/\/oig.hhs.gov\/reports-and-publications\/featured-topics\/opioids\/\">opioid epidemic<\/a> complicates things, said Kasey Bowden, MS, NP, who is leading Sickle Cell Transitions together with <a href=\"https:\/\/www.uchealth.org\/provider\/amira-del-pino-jones-md-internal-medicine\/\">Amira Del Pino-Jones, MD<\/a>. Doctors have become wary of prescribing the large doses of pain medications that patients like Lee depend on. Sickle cell patients, in turn, feel like they\u2019re on the defensive, having to justify what is in fact a justified level of pain management even as providers unfamiliar with sickle cell disease wonder if patients have ulterior motives, Bowden said.<\/p>\n<p>\u201cThey don\u2019t trust providers and there\u2019s a mutual feeling that their providers don\u2019t trust them,\u201d Bowden said. The patients \u201cfeel like they\u2019re not understood \u2013 probably because they\u2019re not understood,\u201d she added.<\/p>\n<h2><strong>Connecting with patients<\/strong><\/h2>\n<p>Del Pino-Jones says sickle cell patients are also prone to behavioral health problems such as depression \u2013 no surprise when you consider where they are in life. Lee said he has spent a Thanksgiving and a Halloween in the hospital, among many other occasions. \u201cIt genuinely hurts to be on, like, Facebook or Snapchat and see all your people having fun and you\u2019re in the hospital,\u201d he said.<\/p>\n<p>Providers and patients can both gain from better mutual understanding, Del Pino-Jones said.<\/p>\n<figure id=\"attachment_12097\" aria-describedby=\"caption-attachment-12097\" style=\"width: 249px\" class=\"wp-caption alignright\"><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-12097 size-medium\" src=\"https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2017\/09\/19023842\/EXT_09XX17-KathyrnHassell.webp\" alt=\"Portrait of Dr.Kathryn Hassell, a sickle cell expert at UCHealth.\" width=\"249\" height=\"300\" srcset=\"https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2017\/09\/19023842\/EXT_09XX17-KathyrnHassell.webp 830w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2017\/09\/19023842\/EXT_09XX17-KathyrnHassell-249x300.webp 249w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2017\/09\/19023842\/EXT_09XX17-KathyrnHassell-768x925.webp 768w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2017\/09\/19023842\/EXT_09XX17-KathyrnHassell-125x150.webp 125w, https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2017\/09\/19023842\/EXT_09XX17-KathyrnHassell-200x241.webp 200w\" sizes=\"auto, (max-width: 249px) 100vw, 249px\" \/><figcaption id=\"caption-attachment-12097\" class=\"wp-caption-text\">Kathryn Hassell, MD, is a sickle cell physician at UCHealth.<\/figcaption><\/figure>\n<p>\u201cThese are young adults who in a perfect world would be out with friends, with family,\u201d she said. \u201cWe need to get to know them as people and hear their voices, and have that as part of their care plan for them.\u201d<\/p>\n<p>Sickle Cell Transitions involves Bowden and Del Pino-Jones conducting in-depth interviews with sickle cell patients to better understand their concerns. Bowden and Del Pino-Jones explain the benefits of having a primary care physician that can then bring in Hassell or other specialists when needed. And, together with the Metro Community Provider Network, they connect patients who don\u2019t have a primary care physician with one trained in handling sickle cell disease.<\/p>\n<p>For now, even with the recent approval of the first new sickle cell disease therapy in two decades, focus is still on managing the disease in adults (children in some cases can be cured with a bone marrow transplant). But Hassell said advances in gene therapy could one day stop the disease regardless of age. She would like to bring such research to CU, though funding is a barrier \u2013 a common refrain in the sickle cell community. She thinks gene therapy <a href=\"https:\/\/www.technologyreview.com\/s\/601651\/gene-therapy-is-curing-hemophilia\/\">successes<\/a> among hemophilia patients could pave the way for similar advances for sickle cell disease.<\/p>\n<p>Until then, the work of Bowden and Del Pino-Jones can make a difference, Lee said.<\/p>\n<p>\u201cYou\u2019ve got to connect with your patient, and as far as the pain, you\u2019ve really got to figure out what\u2019s going on,\u201d he said.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>&nbsp; Stephen Lee seems like a typical 28-year-old guy. He likes to hang out with friends, drive his black Mustang GT, and get outside on warm summer days. But one small thing is enough to send him to UCHealth University of Colorado Hospital\u00a0in crippling pain several times a year. That difference is so small you\u2019d [&hellip;]<\/p>\n","protected":false},"author":23,"featured_media":12095,"comment_status":"closed","ping_status":"closed","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":[5],"tags":[1024],"class_list":["post-12091","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-innovative-care","tag-blood-disorders-disease-care-hematology"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.4 (Yoast SEO v27.4) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>UCHealth takes aim at sickle cell, a not-so-rare genetic disorder - UCHealth Today<\/title>\n<meta name=\"description\" content=\"\u201cShe got it to the point I could function without being drowsy, so I could go on with my life,\u201d Lee said. There\u2019s still pain, though: as he spoke, he winced as he put a hand to his right knee and extended it, and his back was hurting on this day, too, he said....\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.uchealth.org\/today\/uchealth-takes-aim-at-a-not-so-rare-genetic-disorder\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"UCHealth takes aim at sickle cell, a not-so-rare genetic disorder\" \/>\n<meta property=\"og:description\" content=\"\u201cShe got it to the point I could function without being drowsy, so I could go on with my life,\u201d Lee said. There\u2019s still pain, though: as he spoke, he winced as he put a hand to his right knee and extended it, and his back was hurting on this day, too, he said.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.uchealth.org\/today\/uchealth-takes-aim-at-a-not-so-rare-genetic-disorder\/\" \/>\n<meta property=\"og:site_name\" content=\"UCHealth Today\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/uchealthorg\/\" \/>\n<meta property=\"article:published_time\" content=\"2017-09-19T14:33:01+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2023-10-04T17:22:51+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/uchealth-wp-uploads.s3.amazonaws.com\/wp-content\/uploads\/sites\/6\/2017\/09\/19023625\/EXT_09XX17-StephenLee.jpg\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Todd Neff, for UCHealth\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@uchealth\" \/>\n<meta name=\"twitter:site\" content=\"@uchealth\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Todd Neff, for UCHealth\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"7 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/www.uchealth.org\\\/today\\\/uchealth-takes-aim-at-a-not-so-rare-genetic-disorder\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/www.uchealth.org\\\/today\\\/uchealth-takes-aim-at-a-not-so-rare-genetic-disorder\\\/\"},\"author\":{\"name\":\"Todd Neff, for UCHealth\",\"@id\":\"https:\\\/\\\/www.uchealth.org\\\/today\\\/#\\\/schema\\\/person\\\/da7733ff5562e48e55c027d111ee5911\"},\"headline\":\"UCHealth takes aim at sickle cell, a not-so-rare genetic disorder\",\"datePublished\":\"2017-09-19T14:33:01+00:00\",\"dateModified\":\"2023-10-04T17:22:51+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/www.uchealth.org\\\/today\\\/uchealth-takes-aim-at-a-not-so-rare-genetic-disorder\\\/\"},\"wordCount\":1356,\"publisher\":{\"@id\":\"https:\\\/\\\/www.uchealth.org\\\/today\\\/#organization\"},\"image\":{\"@id\":\"https:\\\/\\\/www.uchealth.org\\\/today\\\/uchealth-takes-aim-at-a-not-so-rare-genetic-disorder\\\/#primaryimage\"},\"thumbnailUrl\":\"https:\\\/\\\/uchealth-wp-uploads.s3.amazonaws.com\\\/wp-content\\\/uploads\\\/sites\\\/6\\\/2017\\\/09\\\/19023625\\\/EXT_09XX17-StephenLee.webp\",\"keywords\":[\"Blood disorders &amp; 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