People with Down Syndrome Are Living Longer, but the Health System Still Treats Many as Kids

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2 years ago

April 18, 2023

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MONTROSE, Mo. It took Samantha Lesmeisters family four months to find a medical professional who could see that she was struggling with something more than her Down syndrome.

This story also ran on NBC News. It can be republished for free.

The young woman, known as Sammee, had become unusually sad and lethargic after falling in the shower and hitting her head. She lost her limited ability to speak, stopped laughing, and no longer wanted to leave the house.

General-practice doctors and a neurologist said such mental deterioration was typical for a person with Down syndrome entering adulthood, recalled her mother, Marilyn Lesmeister. They said nothing could be done.

The family didnt buy it.

Marilyn researched online and learned the University of Kansas Health System has a special medical clinic for adults with Down syndrome. Most other Down syndrome programs nationwide focus on children, even though many people with the condition now live into middle age and often develop health problems typically associated with seniors. And most of the clinics that focus on adults are in urban areas, making access difficult for many rural patients.

The clinic Marilyn found is in Kansas City, Kansas, 80 miles northwest of the familys cattle farm in central Missouri. She made an appointment for her daughter and drove up.

The programs leader, nurse practitioner Moya Peterson, carefully examined Sammee Lesmeister and ordered more tests.

She reassured me that, Mom, youre right. Somethings wrong with your daughter, Marilyn Lesmeister said.

With the help of a second neurologist, Peterson determined Sammee Lesmeister had suffered a traumatic brain injury when she hit her head. Since that diagnosis about nine years ago, she has regained much of her strength and spirit with the help of therapy and steady support.

Sammee, now 27, can again speak a few words, including hi, bye, and love you. She smiles and laughs. She likes to go out into her rural community, where she helps choose meals at restaurants, attends horse-riding sessions at a stable, and folds linens at a nursing home.

Without Petersons insight and encouragement, the family likely would have given up on Sammees recovery. She probably would have continued to wither within herself, her mother said. I think she would have been a stay-at-home person and a recluse. Samantha Sammee Lesmeister rides a horse with the help of instructors Rike Mueller (left) and Samantha Richardson at Remember to Dream, a therapeutic riding center in Cole Camp, Missouri. (Christopher Smith for KFF Health News) Samantha Sammee Lesmeister hugs a horse named Dragon. (Christopher Smith for KFF Health News)

A Whole Different Ballgame

The Lesmeisters wish Petersons program wasnt such a rarity. A directory published by the Global Down Syndrome Foundation lists just 15 medical programs nationwide that are housed outside of childrens hospitals and that accept Down syndrome patients who are 30 or older.

The United States had about three times as many adults with the condition by 2016 as it did in 1970. Thats mainly because children born with it are no longer denied lifesaving care, including surgeries to correct birth defects.

Adults with Down syndrome often develop chronic health problems, such as severe sleep apnea, digestive disorders, thyroid conditions, and obesity. Many develop Alzheimers disease in middle age. Researchers suspect this is related to extra copies of genes that cause overproduction of proteins, which build up in the brain.

Taking care of kids is a whole different ballgame from taking care of adults, said Peterson, the University of Kansas nurse practitioner.

Sammee Lesmeister is an example of the trend toward longer life spans. If shed been born two generations ago, she probably would have died in childhood.

She had a hole in a wall of her heart, as do about half of babies with Down syndrome. Surgeons can repair those dangerous defects, but in the past, doctors advised most families to forgo the operations, or said the children didnt qualify. Many people with Down syndrome also were denied care for serious breathing issues, digestive problems, or other chronic conditions. People with disabilities were often institutionalized. Many were sterilized without their consent.

Such mistreatment eased from the 1960s into the 1980s, as people with disabilities stood up for their rights, medical ethics progressed, and courts declared it illegal to withhold care. Those landmark rulings sealed the deal: Children with Down syndrome have the right to the same lifesaving treatment that any other child would deserve, said Brian Skotko, a Harvard University medical geneticist who leads Massachusetts General Hospitals Down Syndrome Program.

The median life expectancy for a baby born in the U.S. with Down syndrome jumped from about four years in 1950 to 58 years in the 2010s, according to a recent report from Skotko and other researchers. In 1950, fewer than 50,000 Americans were living with Down syndrome. By 2017, that number topped 217,000, including tens of thousands of people in middle age or beyond.

The population is expected to continue growing, the report says. A few thousand pregnant women a year now choose abortions after learning theyre carrying fetuses with Down syndrome. But those reductions are offset by the increasing number of women becoming pregnant in their late 30s or 40s, when they are more likely to give birth to a baby with Down syndrome.

Skotko said the medical system has not kept up with the extraordinary increase in the number of adults with Down syndrome. Many medical students learn about the condition only while training to treat pediatric patients, he said.

Few patients can travel to specialized clinics like Skotkos program in Boston. To help those who cant, he founded an online service, Down Syndrome Clinic to You, which helps families and medical practitioners understand the complications and possible treatments. Email Sign-Up

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If They Say It Hurts, I Listen

Charlotte Woodward, who has Down syndrome, is a prominent advocate for improved care. She counts herself among the tens of thousands of adults with the condition who likely would have died years ago without proper treatment. Woodward, 33, of Fairfax, Virginia, had four heart surgeries as a child and then a heart transplant in her 20s.

Woodward, who is an education program associate for the National Down Syndrome Society, has campaigned to end discrimination against people with disabilities who need organ transplants.

She said her primary care doctor is excellent. But she has felt treated like a child by other health care providers, who have spoken to her parents instead of to her during appointments.

She said many general-practice doctors seem to have little knowledge about adults with Down syndrome. Thats something that should change, she said. It shouldnt just be pediatricians that are aware of these things.

Woodward said adults with the condition should not be expected to seek care at programs housed in childrens hospitals. She said the country should set up more specialized clinics and finance more research into health problems that affect people with disabilities as they age. This is really an issue of civil rights, she said.

Advocates and clinicians say its crucial for health care providers to communicate as much as possible with patients who have disabilities. That can lead to long appointments, said Brian Chicoine, a family practice physician who leads the Adult Down Syndrome Center of Advocate Aurora Health in Park Ridge, Illinois, near Chicago.

Its very important to us that we include the individuals with Down syndrome in their care, he said. If youre doing that, you have to take your time. You have to explain things. You have to let them process. You have to let them answer. All of that takes ore time.

Time costs money, which Peterson believes is why many hospital systems dont set up specialized clinics like the ones she and Chicoine run.

Petersons methodical approach was evident as she saw new patients on a recent afternoon at her Kansas City clinic. She often spends an hour on each initial appointment, speaking directly to patients and giving them a chance to share their thoughts, even if their vocabularies are limited.

Her patients that day included Christopher Yeo, 44, who lives 100 miles away in the small town of Hartford, Kansas. Yeo had become unable to swallow solid food, and hed lost 45 pounds over about 1 years. He complained to his mother, Mandi Nance, that something tickled in his chest.

During his exam, he lifted his shirt for Peterson, revealing the scar where hed had heart surgery as a baby. He grimaced, pointed to his chest, and repeatedly said the word gas.

Peterson looked Yeo in the eye as she asked him and his mother about his discomfort. Nurse practitioner Moya Peterson speaks to patient Christopher Yeo, of Hartford, Kansas. Peterson leads an unusual clinic for adults with Down syndrome, which is housed at the University of Kansas Health System in Kansas City.(Tony Leys / KFF Health News)

The nurse practitioner takes seriously any such complaints from her patients. If they say it hurts, I listen, she said. Theyre not going to tell you about it until it hurts bad.

Yeos mother had taken him to a cardiologist and other specialists, but none had determined what was wrong.

Peterson asked numerous questions. When does Yeos discomfort seem to crop up? Could it be related to what he eats? How is his sleep? What are his stools like?

After his appointment, Peterson referred Yeo to a cardiologist who specializes in adults with congenital heart problems. She ordered a swallowing test, in which Yeo would drink a special liquid that appears on scans as it goes down. And she recommended a test for Celiac disease, an autoimmune disorder that interferes with digestion and is common in people with Down syndrome. No one had previously told Nance about the risk.

Nance, who is a registered nurse, said afterward that she has no idea what the future holds for their family. But she was struck by the patience and attention Peterson and other clinic staff members gave to her son. Such treatment is rare, she said. I feel like its a godsend. I do, she said. I feel like its an answered prayer.

Like a Person, and Not a Condition

Peterson serves as the primary care provider for some of her patients with Down syndrome. But for many others, especially those who live far away, she is someone to consult when complications arise. Thats how the Lesmeisters use her clinic.

Mom Marilyn is optimistic Sammee can live a fulfilling life in their community for years to come. Some people have said I need to put her in a home. And Im like, What do you mean? And they say, You know ? a home, she said. Im like, Shes in a home. Our home.

Sammees sister, who lives in Texas, has agreed to take her in when their parents become too old to care for her.

Marilyns voice cracked with emotion as she expressed her gratitude for the help they have received and her hopes for Sammees future.

I just want her to be taken care of and loved like I love her, she said. I want her to be taken care of like a person, and not a condition. Marilyn Lesmeister and her daughter Samantha Sammee Lesmeister.(Christopher Smith for KFF Health News)

Tony Leys: tleys@kff.org, @tonyleys Related Topics Health Industry Mental Health Rural Health States Disabilities Kansas Missouri Virginia Contact Us Submit a Story Tip

Environment

Tesla (TSLA) soars on Trump making easier path for Tesla’s non-existent self-driving tech

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2 hours ago

November 18, 2024

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Tesla (TSLA) soars on Trump making easier path for Tesla's non-existent self-driving tech

Tesla Full Self-Driving Beta smear campaign

Tesla (TSLA) is soaring in anticipation that Trump’s administration will make an easier path for Tesla’s self-driving tech, which still doesn’t work, to be approved federally.

Currently, self-driving technology is addressed at the state level, with each state having its own regulations for approving self-driving systems on its roads.

During a conference call following Tesla’s last earnings results, CEO Elon Musk, who has been financially backing the reelection of Donald Trump and “fully endorsed” him, hinted that he could work with the new federal government to get a federal self-driving approval process going.

Now, Bloomberg reports that Trump’s transition team is discussing making it a priority:

Members of President-elect Donald Trump’s transition team have told advisers they plan to make a federal framework for fully self-driving vehicles one of the Transportation Department’s priorities, according to people familiar with the matter.

This news sent Tesla’s stock up 7%, or an increase of 470 billion in value.

That’s surprising because before now, the regulatory aspect of Tesla’s self-driving effort didn’t seem like the biggest hurdle – making the technology work still seems to be the biggest hurdle.

Tesla has been wrong about its self-driving timeline too many times to count, but the latest one is to release unsupervised self-driving in California and Texas in Q2 2025.

Ashok Elluswamy, the head of FSD at Tesla, stated that Tesla’s goal is to achieve over 600,000 miles between critical disengagement, which is based on NHTSA’s data of accidents between human-driven miles.

Tesla has not released any data about its self-driving effort, and therefore, the best data available is crowdsourced. That data currently shows about 241 miles between critical disengagement:

Tesla would need a 2,500x improvement in miles between disengagement to reach a safer-than-human level, which has been the goal before getting regulatory approval.

Electrek’s Take

That sounds like a much bigger hurdle than getting regulatory approval.

I actually agree with the Trump administration that it makes more sense to have a federal framework for approving self-driving systems than at the state level.

But I don’t see how it will help Tesla since there’s no clear path to Tesla achieving a level safer than human with their current approach any time soon.

At the current pace, the 2,500x improvement would take 10 years and we have yet to see a significant acceleration to the pace of improvement.

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Sports

College football takeaways: Key storylines and performances from Week 12

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2 hours ago

November 18, 2024

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College football takeaways: Key storylines and performances from Week 12

Nov 18, 2024, 07:30 AM ET

What a week it was in college football: Five AP Top 25 teams lost to unranked opponents, and after No. 6 BYU’s defeat to Kansas, the Big 12 appears to be up for grabs after victories by Colorado and Arizona State.

The Buffaloes and Sun Devils have proved football fans wrong this season as Colorado is tied for the top spot in the Big 12 and Arizona State is a game behind. With both teams on a winning streak, what can they credit for their success?

After a rough start to the season, Billy Napier and Florida have turned things around and the Gators are one win from bowl eligibility. With an upset win over No. 22 LSU, is it time to stop questioning Napier?

Our college football experts break down key storylines and takeaways from Week 12.

Losses might be as important as wins in the CFP committee meeting room

With six new committee members, a new committee chair and a new College Football Playoff executive director, there are a lot of new faces at selection central. Each group is different. Ranking the top 25 teams is a subjective system, and this year’s committee appears to be putting an emphasis on losses — maybe more than in years past.

Who teams lose to and how has always mattered, but it might be more of a factor this year with multiple two-loss teams to sort through. It’s also a big reason why Ohio State is No. 2 and Penn State is No. 4 — close losses to highly-ranked teams. It’s never a good time for a bad loss, but it could mean the difference this year between a first-round bye, a first-round home game — or a seat on the couch. — Heather Dinich

Rivalries matter more than ever

Texas has never viewed Arkansas on par with rival Oklahoma, but Arkansas lives to torment Texas. Three years ago, the No. 15 Longhorns came to Fayetteville and were stomped 40-21. Jubilant Arkansas fans stormed the field.

But returning as conference rivals for the first time since the Razorbacks left the Southwest Conference in 1991 seemed to mean something to No. 3 Texas, too, after a tough 20-10 win over the 5-5 Razorbacks. “It was personal for sure,” senior edge rusher Barryn Sorrell said.

Quinn Ewers sealed the win by running for three yards on fourth-and-2 with 2:14 left. Rather than trying to evade linebacker Larry Worth III, Ewers decided to bull his way over him. “I just tried to put a little statement into it, that’s all,” Ewers said with a smile. “Just the history that these two programs have together, it’s going to be tough.”

Texas joining the SEC reconnected old grudge matches with Texas A&M and Arkansas. The 74,929 who showed up Saturday — the 10th-largest crowd in Arkansas history — threw their Horns Down at every opportunity. With an eight-game SEC schedule, there’s only one permanent rivalry guaranteed per school, and for the Longhorns, that will always be Oklahoma. Texas-Arkansas and Texas-Texas A&M could come and go. When college football is becoming more unrecognizable by the day, regional rivalries should be a priority. — Dave Wilson

Congrats to Colorado and Arizona State for proving us all wrong

It’s probably time to admit we were wrong about Deion Sanders’ Colorado and Kenny Dillingham’s Arizona State in 2024.

OK, maybe not all of us. But as both schools improved to 8-2 on Saturday, a preseason poll from CBS Sports resurfaced that ranked Sanders and Dillingham, respectively, as the 15th- and 16th-best coaches among the Big 12’s 16 football programs. And whether you had either coach/program that low in August, there can’t be many of us who expected either school to be here in Week 12: level alongside Iowa State for second in the Big 12 standings and in line to play at least some kind of role in the College Football Playoff picture over the final weeks of the regular season.

Colorado earned its fourth win in a row and Travis Hunter logged another entry to his Heisman Trophy résumé in a 49-24 win over Utah on Saturday, yet Sanders says the Buffaloes still “haven’t even played our best game.” Meanwhile, Arizona State reached its highest win total since 2021 on Saturday night after storming to a 21-0 first-half lead and holding off No. 16 Kansas State after halftime in a 24-14 road win, fueled by the aerial connection between Sam Leavitt (275 passing yards, three touchdowns) and Jordyn Tyson (12 catches, 176 yards, two touchdowns).

The successes at Colorado and Arizona State are a credit to the respective coaching jobs Sanders and Dillingham are executing. They’re also a credit to the concept that there remain many different paths to winning in a seemingly homogenized era of college football dominated by NIL, the transfer portal and the rest. Through 12 weeks, Colorado and Arizona State represent two of the sport’s great surprises this fall, and there are perhaps no two people more acutely aware of the doubters than the coaches leading this pair of impressive turnarounds in 2024.

“We were a three-win team twice,” Dillingham said Saturday night. “We were under NCAA sanctions. Most head coaches, to be brutally honest, you get fired if you take a job under sanctions. You don’t survive. You’re hired to be fired. That’s the nature of the beast. And right now we’re sitting here at 8-2 and couldn’t be prouder.” — Eli Lederman

South Carolina is clearly the nation’s best three-loss team

Shane Beamer’s team is not part of the logjam atop the SEC. The Gamecocks are not in the College Football Playoff mix, essentially eliminated Oct. 12 when they couldn’t hold a fourth-quarter lead at Alabama or tie the score in the closing minute. But since falling to 3-3 in Tuscaloosa, South Carolina has won four straight and continued to be one of the most consistently compelling squads on Saturdays.

After riding Kyle Kennard and the defense to wins over Oklahoma, Texas A&M and Vanderbilt, South Carolina needed the offense to outlast Missouri, going 70 yards in 47 seconds to score the winning touchdown with 15 seconds left. Redshirt freshman LaNorris Sellers is blossoming into one of the nation’s best young quarterbacks, as he set career highs for passing yards (353) and passing touchdowns (five) against Missouri. South Carolina has defeated three straight AP-ranked opponents for the first time in team history.

“We’re on the right track,” Beamer said. “The young players we have in this program right now, the quarterback, Dylan [Stewart]. You talk about the recruits that are here tonight, the ones that are committed to us. The best days of South Carolina football are right in front of us.”

There will be some what-ifs for the Gamecocks, especially in their losses to LSU and Alabama. But after a 5-7 season last fall, Beamer has recaptured his big-game magic and built a program that no opponent should want to face right now. — Adam Rittenberg

A resolute Billy Napier and his Florida team just keep getting back up

When it starts to go bad for a coach in the SEC, especially one who’s in his third season and has yet to manage a winning record, it’s usually like a two-ton truck cresting over an icy slope.

There’s no stopping the slide.

Even with the recent and dreaded vote of confidence for Florida’s Billy Napier, there are no guarantees about his future. But nobody would have predicted he had any future at Florida two months ago after an ugly home loss to Texas A&M, two weeks removed from a 41-17 beatdown by Miami at home. The speculation late that night was that Napier might be out as early as the next morning.

But he had just enough support in key areas to hang on, and most importantly, the players in his locker room still believed in him. And here we are, with two weeks left in the regular season, and the Gators are one win away from bowl eligibility after taking down LSU 27-16 at home Saturday. Another huge opportunity awaits this weekend when No. 11 Ole Miss visits the Swamp.

The Gators (5-5) have been resilient, just like their coach, and responded from a 49-17 blowout loss at Texas to play one of their most complete games of the season at home against LSU. Simply making a bowl game is hardly the standard at Florida, but the way Napier has kept his team together, continued to develop young quarterback DJ Lagway and gone about his business with accountability, humility and a quiet confidence is proof he deserves a fourth season to show he can get this program to that standard.

It’s time to get behind Napier and quit questioning him. It’s clear the Gators have a talented nucleus of younger players and that those players have their coach’s back. — Chris Low

Louisville … what are you doing?

Stanford vs. Louisville was an inconsequential game that should have flown under the radar, regardless of the result. And while the outcome — a Stanford win that ended a six-game losing streak — was a significant upset, it’s the way it happened that deserves some added attention. It might be the most improbable way a team has lost a game all season. Let’s dive in.

After trailing 35-21 in the fourth quarter, Stanford scored touchdowns with 6:37 left and 45 seconds left to cut the deficit to 35-34. At this point, I thought Stanford coach Troy Taylor, a coach who once went an entire high school season without punting, would go for the win with a 2-point conversion try. He did not. Tie score.

On the ensuing kickoff, Louisville opted against taking the ball at the 25-yard line and returned it to the 19. After a spike, a deep shot, a short pass and another deep shot all fail, Stanford took possession at its 45 with 4 seconds left. Overtime felt inevitable. Wrong.

Stanford completed a 1-yard pass only to be gifted 15 yards by an unsportsmanlike conduct penalty by Louisville, giving the Cardinal a chance to win the game on a 57-yard field goal attempt. Improbable, still. So, what does Louisville do: jumps offside to make the kick easier. And Stanford’s Emmet Kenney took advantage, making a 52-yard field goal as time expired.

An all-time collapse. — Kyle Bonagura

Kennesaw State’s Bohannon shows class on way out

Last weekend, Kennesaw State fired coach Brian Bohannon, who helped build the program from scratch nine years ago, then ushered it from the FCS into the FBS this season. That firing didn’t stop the former FCS Coach of the Year from supporting his players before its game Saturday against Sam Houston.

In a video posted by a Kennesaw State football alum, Bohannon showed up to the team’s pregame walk to the stadium and gave the players hugs and high-fives as they walked by.

The Owls ultimately lost in overtime to fall to 1-9 but showed fight against the Bearkats, who remain in contention for the Conference USA title.

Despite being fired, Bohannon should be revered in Kennesaw for taking the Owls to the FCS playoffs four times, for elevating the program to the FBS — and for the way he graciously exited. — Jake Trotter

Science

Rare 2,000-Year-Old Gladiator Knife Handle Found Near Hadrian’s Wall

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2 hours ago

November 18, 2024

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Rare 2,000-Year-Old Gladiator Knife Handle Found Near Hadrian's Wall

Archaeologists have uncovered a remarkable 2,000-year-old Roman knife handle in Northumberland, England. The discovery, made in the River Tyne near Corbridge Roman Town, features a detailed depiction of a gladiator. This unique find sheds light on the influence and popularity of gladiators across the Roman Empire, including its farthest reaches in Britain.

As per a report by English Heritage, the handle, crafted from copper alloy, portrays a secutor gladiator, identifiable by his heavy armour and helmet. Secutors, named after the Latin term for “chaser,” were known for engaging in close combat against their agile counterparts, the retiarii. Notably, the figurine represents a left-handed fighter, a rarity in Roman culture, where left-handedness was often considered inauspicious. Researchers from English Heritage have suggested that this specific detail may indicate the handle was modelled after an actual gladiator, rather than serving as a general representation.

Gladiator Culture in the Roman Empire

Gladiatorial games were a significant feature of Roman public entertainment, drawing large crowds to amphitheatres across the empire. While these fighters were typically enslaved individuals or criminals, some gained celebrity status, despite their marginalised social standing. The events, often hosted by elite Roman citizens or emperors, aimed to display power and wealth.

Frances McIntosh, Collections Curator for Hadrian’s Wall and the North East at English Heritage, stated that gladiators’ popularity extended far beyond Rome, a fact underscored by the discovery of this artefact. Although memorabilia such as pottery and figurines have been documented, similar finds in Britain are considered rare.

Plans for Public Display

Corbridge Roman Town, originally established as a supply base in 79 AD, served as a key site during the Roman occupation of Britain until around 400 AD. English Heritage plans to exhibit the knife handle, along with other artefacts recovered from the river, at the Corbridge site next year.

This discovery continues to emphasise the enduring fascination with gladiators, both in ancient times and modern culture.