FORT COLLINS — Lilly Downs rolled off the bed in her new rental and started putting in place her morning’s IV fluids, which drift from a tube in her chest into her bloodstream to stay the 20-year-old hydrated.Subsequent, she overwhelmed and dissolved drugs so they might run thru a separate tube into her intestines, which soak up the medication higher than her abdomen.The stairs Lilly took that October morning are vital as a result of her abdomen stopped running correctly following her first bout with COVID-19 4 years in the past. However her regimen additionally served any other goal: It was once content material she filmed for a video that she later posted on TikTok, the place she has accumulated just about 470,000 fans. Lilly added Tylenol to her combine of medication that morning, she defined within the video, as a result of her mother was once going to be giving her an intravenous immunoglobulin, or IVIG, infusion, which docs have discovered to be an efficient remedy for sufferers who’ve lengthy COVID. “I all the time must pre-medicate with Benadryl and Tylenol in order that I don’t have a response to the infusion,” Lilly stated throughout the minute-long clip.For Lilly, TikTok has turn out to be one of those a task — and indisputably a distraction — whilst dwelling with lengthy COVID, the identify given to the bodily and cognitive signs that may persist for months or even years after sufferers’ preliminary infections. She’s turn out to be a social media influencer, incomes 1000’s of greenbacks and logo offers through documenting what it’s like to stand existence with a prolonged sickness. She first fell in poor health with COVID-19 as a teenager in 2020 throughout the peak of the pandemic, and The Denver Put up has adopted Lilly since 2021 thru more than one health center stints and her seek for normalcy and solutions as to why signs, together with a prime center charge and mind fog, nonetheless linger. The Put up closing stuck up with Lilly in 2022, when she wasn’t simply nonetheless unwell, her signs have been getting worse and she or he was once hospitalized with life-threatening infections. Now, Lilly stated in a up to date interview, she’s doing higher bodily, dwelling on her personal and making plans to renew her training in January whilst the usage of her platform on social media to teach other people about her existence and sickness. “Filming and enhancing my movies — it gave me one thing else to concentrate on,” she stated.On TikTok, Lilly stocks her reports with feeding tubes, drugs and being interviewed through information newshounds. Loads of 1000’s — every so often hundreds of thousands — of other people watch her person movies. However she additionally stocks belongings you’d be expecting from a regular 20-year-old — shifting into her first rental, touring with pals — and it’s these items that display how some distance Lilly has come. 
Lilly Downs, 20, displays a TikTok movies of her dancing with a sibling, at her rental in Fortress Collins, Colorado, on Thursday, Oct. 17, 2024. (Picture through Hyoung Chang/The Denver Put up)Two years in the past, Lilly was once an 18-year-old who simply sought after to move house after spending months at Denver’s Rocky Mountain Clinic for Kids. Any trip and faculty plans she entertained have been on hang out of worry she’d wish to go back to the health center once more. Now, she’s dwelling existence outdoor the health center’s partitions, on her personal for the primary time, touring with pals to Utah, and volunteering at a camp for chronically in poor health youngsters — and she or he’s sharing it with the arena.Studying extra about lengthy COVIDLilly was once 16 when she first turned into unwell and was once hospitalized throughout one among Colorado’s deadliest waves of the virus. Quickly after, she started creating ulcers in every single place her frame that docs have been not able to give an explanation for and struggled to regard. When she first turned into in poor health, pediatric docs have been unprepared for sufferers with COVID-19 to expand persisting signs. Lengthy COVID was once first noticed in adults, and researchers and physicians didn’t understand how commonplace it was once in kids and youths.So much has modified since Lilly first turned into unwell, or even since 2022, when her signs worsened to the purpose she needed to relearn how you can stroll on her personal and she or he spent lots of the yr within the health center. Whilst COVID-19 continues to be round, vaccines and coverings at the moment are to be had. Docs and researchers have additionally realized extra about lengthy COVID, together with the way it impacts teenagers, and are running on discovering higher therapies, similar to IVIG, for sufferers with persisting signs, stated Dr. Alexandra Yonts, a pediatric infectious illness doctor at Kids’s Nationwide Clinic in Washington, D.C.Docs nonetheless don’t know why somebody particularly develops lengthy COVID, however there are chance elements, such as though somebody has more than one signs after they first get unwell or have autoimmune sicknesses, she stated. 
Lilly Downs, 20, hangs an IV bag prime at the wall above her prior to filming a video for TikTok at her rental in Fortress Collins, Colorado, on Thursday, Oct. 17, 2024. (Picture through Hyoung Chang/The Denver Put up)Adolescent women are at the next chance of creating lengthy COVID, even supposing the situation additionally seems extra in boys ages 5 and more youthful, stated Yonts, director of the health center’s post-COVID program. In 2022, researchers estimated that as many as 651,000 Coloradans had lengthy COVID, with clinics suffering to stay alongside of the call for for remedy. Research additionally display that the extra instances an individual will get COVID-19, their chance of creating lingering signs will increase, she stated, including that obtaining vaccinated decreases an individual’s chance of having lengthy COVID.“We’re indisputably in a a lot more a professional position of this illness,” Yonts stated.At Yonts’ health center, docs have discovered that sufferers can enjoy a spread of lengthy COVID signs. Fatigue and reduced workout tolerance are some of the maximum commonplace. Sufferers additionally seem to fall into two teams, Yonts stated. One workforce has extra cardiovascular signs, similar to center palpitations and issue respiring. The opposite workforce has extra gastrointestinal and neurological signs, similar to complications, vomiting and abdomen ache.“It was once some way to hook up with other people”Whilst there were a duration in 2021 when Lilly seemed to be doing higher, she took an surprising flip as she started vomiting and had bother swallowing and consuming. She landed within the health center once more on the finish of summer time 2021, lacking the primary days of her senior yr at Lakewood Top College. 
On this picture from Aug. 30, 2022, Lilly Downs, then 18, sits in her mattress at Denver’s Rocky Mountain Clinic for Kids. (Picture through Hyoung Chang/The Denver Put up)Lilly was once in the end recognized with gastroparesis, because of this meals doesn’t transfer thru her frame when she eats, and was once put on a feeding tube.However her central line — the very factor that gave her vitamins — saved inflicting life-threatening infections that put her in time and again within the intensive-care unit.So when the fall of 2022 rolled round and Lilly’s pals left for school with out her, she determined to make the most efficient of the placement through posting on TikTok. The social media app turned into now not only a distraction, however a technique to meet other people. Lilly has met others dwelling in Fortress Collins who additionally practice her movies, she stated.“It was once some way to hook up with other people as it’s so much more difficult in actual existence when your folks are long gone,” Lilly stated.TikTok helped Lilly now not most effective make new pals, it additionally let her pals from highschool higher perceive her sickness, she stated.The TikTok movies lend a hand display “that I’m a standard particular person,” she stated.Elisa Downs, Lilly’s mom, stated she didn’t relatively perceive when her daughter began making TikToks — at the same time as she helped make Lillly’s dance movies within the health center. “When she truly began to select up momentum, I used to be, after all, fearful as a result of this international is merciless,” Downs stated, noting how debatable the subject of COVID-19 can also be on-line.However then, Downs stated, she witnessed the group her daughter discovered on-line.“I noticed that it was once giving her a way of goal,” she stated, including, “She was once ready to truly in finding a perfect community of other people there who understood.“Lilly has additionally been ready to generate profits for her TikTok movies by means of the platform’s Author Fund, which can pay customers in accordance with what number of people view and have interaction with their posts. To enroll in the fund, an individual should be no less than 18, have no less than 10,000 fans and no less than 100,000 video perspectives previously 30 days, in step with the social media app. Lilly’s movies about her sickness — particularly those about how she receives supplemental vitamin — earn essentially the most perspectives. Considered one of her clips about her midnight regimen won greater than 60 million perspectives, bringing in about $5,000 by myself.
Lilly Downs, 20, holds a feed pump bag of method she makes use of for calorie consumption whilst at her rental in Fortress Collins, Colorado, on Thursday, Oct. 17, 2024. 4 years after first changing into unwell with COVID-19, Downs is now dwelling with lengthy COVID and dealing as a social media influencer spreading consciousness about power sicknesses. (Picture through Hyoung Chang/The Denver Put up)Lilly stated she is “technically” a social media influencer — she has a supervisor and has began getting logo offers, similar to with BeeKeeper’s Naturals, which sells herbal therapies. Lilly posted a video appearing her the usage of one of the vital corporate’s merchandise to lend a hand together with her mind fog.However Lilly has different plans, too. She moved to Fortress Collins from Golden in August and is adjusting to dwelling on her personal for the primary time. She desires to get any other process and get started school subsequent semester at Colorado State College, finding out vitamin science in hopes of turning into a pediatric dietitian. “I’m excited to have a regimen,” Lilly stated. “Being at school — I’m frightened simply because my mind… is not the place it was once.”A brand new normalPhysically, Lilly stated, her signs have got higher. She nonetheless has days the place they flare and she or he struggles with mind fog, which makes her lose her teach of concept.“I’m indisputably having higher days,” Lilly stated, including, “Simply taking good care of myself is a full-time process.”Her gastroparesis has additionally stepped forward to the purpose the place Lilly can every so often devour meals with out getting unwell. She craves issues that she didn’t like prior to, similar to condiments and ranch dressing, and is on a self-proclaimed cream cheese kick, particularly with pizza. “It’s so just right,” Lilly stated. There was once a time, Lilly stated, when she anticipated that her existence would return to how it was once prior to the pandemic, prior to she were given COVID-19, when she used to play football and move to college.“For goodbye we have been simply conserving out for the normalcy,” she stated.However, Lilly stated, “That is my new standard.”Join our weekly e-newsletter to get well being information despatched instantly in your inbox.Up to date 11:10 a.m. Dec. 1, 2024: This tale has been up to date to take away some private details about the topic.
Initially Printed: December 1, 2024 at 6:00 AM MST
