Monthly Archives: January 2022

Rose Bowl: Utah vs. Ohio State odds, picks and prediction – USA TODAY Sportsbook Wire

Posted: January 3, 2022 at 1:31 am

The No. 11 Utah Utes (10-3) meet the No. 7 Ohio State Buckeyes (10-2) Saturday for the Rose Bowl Game presented by Capital One Venture X. Kickoff is scheduled for 5 p.m. ET. Below, we look at the Utah vs. Ohio State odds and lines, and make our expert college football picks, predictions and bets.

The Utes picked up their first-ever Pac-12 Championship after topping Oregon Dec. 3 for the second time in as many meetings this season. Now, Utah is off to Pasadena for its first Rose Bowl appearance.

Utah has lost its past two bowl games in 2018 and 2019, last winning in the Heart of Dallas Bowl against West Virginia in 2017. The Utes are 14-3 SU across the past 17 bowl game appearances.

The Buckeyes have had a handful of opt-outs, as WRs Chris Olave and Garrett Wilson will not play, nor will OT Nicholas Petit-Frere and DT Haskell Garrett.

Ohio State has won its past three appearances in the Granddaddy of Them All, including a 28-23 win over Washington in the most recent appearance Jan. 1, 2018.

See also:AFCA Coaches Poll powered by USA TODAY Sports

Odds provided by Tipico Sportsbook; accessUSA TODAY Sports Scores and Sports Betting Odds hub for a full list. Lines last updated at 9:30 a.m. ET.

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Utah 36, Ohio State 31

UTAH (+155) is worth a roll of the dice at this price as its excited to be in this game. Its all hands on deck for the Utes as no notable players have opted out despite several players declaring for the draft.

Ohio State will be without Olave and Wilson on offense, but it still has tremendous weapons in Heisman finalist QB C.J. Stroud, freshman sensation RB TreVeyon Henderson and WR Jaxon Smith-Njigba.

Plenty of talent is still around for the Buckeyes despite that theyre down a couple of stars, but its going to be an uphill battle all afternoon.

While UTAH +4 (-110) catching three and a hook is a good play if youre not quite feeling them straight up. Its going to be a close game and theres going to be plenty of scoring.

Utah RB Tavion Thomas rushed for 1,041 yards and 20 touchdowns this season, and he is going to be a handful for Ohio State all day long.

The OVER 64 (-110) is the lean in this game, as we have two powerful offenses squaring off. Utah was good for 35.5 PPG this season, while Ohio State rolled up 551.3 total yards per game and 45.5 PPG, both tops in the country.

There will be a bit of a step back with no Olave and Wilson, but Henderson should run wild and Jaxon-Njigba will certainly get his.

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Rose Bowl: Utah vs. Ohio State odds, picks and prediction - USA TODAY Sportsbook Wire

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Detroit Lions at Seattle Seahawks odds, picks and prediction – USA TODAY Sportsbook Wire

Posted: at 1:31 am

The Detroit Lions (2-12-1) face the Seattle Seahawks (5-10) in Week 17. Kickoff is set for 4:25 p.m. ET Sunday at Lumen Field. Below, we look at the Lions vs. Seahawks odds and lines, and make our best NFL picks, predictions and bets.

The Lions only two wins of the season have come in the last four weeks, although they are coming off a 20-16 loss to the Atlanta Falcons in Week 16. Detroit has scored 29 and 30 points in their two wins but has reached 20 points on just one other occasion this season.

The Seahawks have the first losing season in the career of QBRussell Wilson.Seattle has lost two games in a row and five of their last seven, including a 25-24 loss to the Chicago Bears in Week 16 when the Bears scored a touchdown and were successful on the two-point conversion with a minute left in the game.

Odds provided by Tipico Sportsbook; accessUSA TODAY Sports Scores and Sports Betting Odds hub for a full list. Lines last updated at 11:10 a.m. ET.

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Lions

Seahawks

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Seahawks 26, Lions 17

Money line

PASSon the money line.

The Lions will be startingTim Boyleat quarterback and theyre winless on the road this season. They arent like to win Sunday. The money line is too high on the Seahawks, too, as you have to wager more than four times your return.

The Lions are one of the best teams in the league against the spread, going 10-5 ATS, and have covered the spread in six of their last seven games.

However, it is too much to ask for Boyle to keep up with Wilson. The Seahawks have scored 24 or more points in three of their last four games and the Lions only average 17.3 points per game.

Take the SEAHAWKS -8.5 (-108).

The Seahawks and Lions have the third- and fourth-lowest Over percentages in the league. However, the Seahawks have had three of their last four games hit the Over.

Take OVER 41.5 (-105).

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Detroit Lions at Seattle Seahawks odds, picks and prediction - USA TODAY Sportsbook Wire

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Eagles vs. Washington Week 17 watching guide: Live streaming, NFL odds, TV coverage map, more – Bleeding Green Nation

Posted: at 1:31 am

The Philadelphia Eagles (8-7) are back on the road in Week 17 to play the Washington Football Team (6-9) for the second time in 13 days.

Both team have been able to active a large number of their players and coaches from the COVID/Reserve list since their Week 15 matchup, but Washington did add two important players to that list this week: Antonio Gibson and Ereck Flowers. The Eagles will likely be a few players of their own due to COVID, but perhaps more concerning is the running back room, which will be without Miles Sanders.

Still, the Eagles have a chance to clinch a spot in the playoffs in Week 17, with a few scenarios playing out.

Heres everything you need to know about how to watch the game.

You get the Eagles game if youre in the BLUE on the map (via 506Sports.com) below.

Date: Sunday, January 2, 2022

Time: 1:00 PM Eastern

Channel: FOX

Announcers: Adam Amin, Mark Schlereth, Shannon Spake (field reporter)

Referee: Clete Blakeman (Eagles are 9-4 in 13 games as field judge and referee.)

Location: FedEx Field | Landover, MD

NFL Network replay: TBA

Radio: SportsRadio 94WIP | SIRIUS: 138 (Phi.), 83 (Was.) | XM: 381 (Phi.), 225 (Was.) | SXM App: 825 (Phi.), 831 (Was.)

Online Streaming

FuboTV

The Eagles are favorites on the road this week, per DraftKings Sportsbook.

Philadelphia Eagles: -4.5 (-200)

Washington Football Team: +4.5 (+170)

Over/under: 44.5

Washington leads the all-time series between these teams, 87-80-5, and while theyve won two of the past three meetings, the Eagles got the most recent win just a couple weeks ago on a Tuesday night pulling off a big comeback, 27-17. The last time the Football Team was the home team, they similarly won 27-17 back in Sept. 2020.

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Week 1 - at Atlanta Falcons (Sept. 12, 1:00 PM ET, FOX

Week 2 - vs San Francisco 49ers (Sept. 19, 1:00 PM ET, FOX)

Week 3 - at Dallas Cowboys (Sept. 27, 8:15 PM ET, ESPN) Monday Night Football

Week 4 - vs. Kansas City Chiefs (Oct. 3, 1:00 PM ET, CBS)

Week 5 - at Carolina Panthers (Oct. 10, 1:00 PM ET, FOX)

Week 6 - vs. Tampa Bay Buccaneers (Oct. 14, 8:20 PM ET, FOX/NFL Network/Amazon) Thursday Night Football

Week 7 - at Las Vegas Raiders (Oct. 24, 4:05 PM ET, FOX)

Week 8 - at Detroit Lions (Oct. 31, 1:00 PM ET, FOX)

Week 9 - vs. Los Angeles Chargers (Nov. 7, 4:05 PM ET, CBS)

Week 10 - at Denver Broncos (Nov. 14, 4:25 PM ET, CBS)

Week 11 - vs. New Orleans Saints (Nov. 21, 1:00 PM ET, FOX)

Week 12 - at New York Giants (Nov. 28, 1:00 PM ET, FOX)

Week 13 - at New York Jets (Dec. 5, 1:00 PM ET, CBS)

Week 14 - BYE WEEK

Week 15 - vs Washington Football team (Dec. 21, 7:00 PM ET, FOX)

Week 16 - vs. New York Giants (Dec. 26, 1:00 PM ET, FOX)

Week 17 - at Washington Football Team (Jan. 2, 1:00 PM ET, FOX)

Week 18 - vs. Dallas Cowboys (Jan. 9, 1:00 PM ET, FOX)

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Eagles vs. Washington Week 17 watching guide: Live streaming, NFL odds, TV coverage map, more - Bleeding Green Nation

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New York Giants at Chicago Bears odds, picks and prediction – USA TODAY Sportsbook Wire

Posted: at 1:31 am

The New York Giants (4-11) visit the Chicago Bears (5-10) Sunday in a Week 17 matchup between teams already eliminated from the playoff picture. Kickoff at Soldier Field is slated for 1 p.m. ET (on CBS). Below, we look at the Giants vs. Bears odds and lines, and make our best NFL picks, predictions and bets.

New York enters on a four-game slide, recently falling at the Philadelphia Eagles 34-10 last week. The Giants also havent covered the spread in those four losses, including back-to-back defeats as double-digit underdogs they were getting 11 points at Philly.

Behind a late drive engineered by third-string QB Nick Foles, Chicago upset the Seattle Seahawks 25-24 in Week 16. The Bears, who were 7-point road underdogs, covered the spread for the first time in their last six games.

Also see:All Week 17 odds and lines

Odds provided by Tipico Sportsbook; accessUSA TODAY Sports Scores and Sports Betting Odds hub for a full list. Lines last updated Saturday at 1:40 p.m. ET.

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Giants

Bears

Bears 17, Giants 13

Backing the Bears at -300 is definitely not wise or worth the risk. They could lose.

With Fields still hampered by an ankle injury, Chicago head coach Matt Nagy named QB Andy Dalton the starter and Foles as the backup.

As for New York, head coach Joe Judge said that QB Jake Fromm and QB Mike Glennon will both see playing time. Fromm made his first career start last week, was unimpressive (6-for-17, 25 yards, 0 TD, 1 INT, 4.9 QBR) and was replaced by Glennon in the third quarter.

Glennon started the first three games of the Giants current four-game losing streak. He was picked off 5 times vs. throwing just 2 TDs in those three starts.

Its possible a bad Giants team (+230) can win on the road here against a bad Bears team, so theres some value in the +230 price. However, Ill PASS.

ATS records: Giants 6-9 | Bears 5-10

NEW YORK +6.5 (-115) is the STRONGEST PLAY 1 times your usual wager.

As terrible as the G-Men have been, the Bears arent good enough to be laying 6.5 points. Chicago covered its first two home games this season but have since gone 0-5 ATS at Soldier Field.

The Giants are 3-5 ATS on the road this season

O/U records: Giants 5-9-1 | Bears 6-9

Despite the low total, UNDER 36.5 (-110) is the way to go.

The Giants average 16.5 points per game (PPG), which is tied for 30th with the Houston Texans only the Jacksonville Jaguars are worse (14.5 PPG).

The Bears arent much better, averaging 17.7 PPG to rank 28th. Plus, they are 2-5 O/U at home this season.

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Miami Dolphins at Tennessee Titans odds, picks and prediction – USA TODAY Sportsbook Wire

Posted: at 1:31 am

On Sunday, the Miami Dolphins (8-7) travel to Nissan Stadium for a 1 p.m. ET kickoff with the Tennessee Titans (10-5).Below, we look at the Dolphins vs. Titansodds and lines, and make our best NFL picks, predictions and bets.

The Titans are coming into this match after defeating the San Francisco 49ers 20-17 as 3-point underdogs on Thursday Night Football in Week 16.

Tennessee is just 3-3 straight-up over its past six games, primed to clinch a playoff spot with a win. However, the Titans have to face a red-hot Dolphins team that will be in a do-or-die game as well.

QB Tua Tagovailoa has the leagues No. 1 completion percentage, having taken his game to the next level, helping Miami win seven straight games after starting 1-7.

Also see:Bet Slippin Podcast: NFL Week 17 picks and predictions

Odds provided by Tipico Sportsbook; accessUSA TODAY Sports Scores and Sports Betting Odds hub for a full list. Lines last updated Saturday at 3:35 p.m. ET.

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Dolphins

Titans

Dolphins 24, Titans 17

SPRINKLE on the DOLPHINS (+145).

The Titans rank in the top half of the league in opponents completion percentage this season, but in their last three games, they havent had the same success, ranking in the bottom ten.

Given the play of Tua and the weapons that are finally healthy around him, the Dolphins have the playmakers necessary to move the ball. Similarly, their defense is finally nearing full strength.

Miami having CB Xavien Howard shadow Titans WR A.J. Brown or even having Howard and Dolphins CB Byron Jones trade-off looks at the star receiver should limit his effectiveness. The 6-foot-1 All-Pro Howard will be an X-factor, giving up under a 60% completion rate when targeted.

If Browns not the same dominant receiver, Titans QB Ryan Tannehill and the entire offense will struggle, opening up a perfect game for the Dolphins to steal and continue their claim for a playoff spot.

BET on the DOLPHINS +3.5 (-120). The Titans are coming off a huge victory and could be primed for a let-down game. The Titans are 5-3 ATS at home but just 2-3 ATS as home favorites.

Given the Dolphins winning streak hasnt quite shown enough to bring them within a field goal, defeating mainly low-tier opponents, this is still a perfect opportunity to back an ultra-hot Miami side.

BET on the OVER 39.5 (-115).

As its the side getting the juice, the sportsbooks clearly like it as well. The last three true playoff contenders that the Dolphins have faced (Bills, Bucs, and Colts), has scored 25 or more points.

Miami even allowed 24 points to the Jets a few weeks ago. Neither team ranks in the top ten in opponents total yards as well, so both teams should be able to move the ball with pace.

This is on the lower end of the total side, and with stars on the offensive side, Id bet on more points in this one.

Also see:All Week 17 odds and lines

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NFL Week 17 Picks: Sportsbook Wire’s ML, ATS and OU predictions for all games – USA TODAY Sportsbook Wire

Posted: at 1:31 am

Happy New Year! Lets make it a profitable one, too. Just two NFL weekend slates separate us from the NFL playoffs. Sportsbook Wires team is here to help you with your Week 17 NFL picks.

Members of our squad offer up their selections on this weeks NFL money line, spread and Over/Under for every game on the Week 17 NFL betting slate around sports betting odds by Tipico Sportsbook.

Check out our staff predictions before locking in your Week 17 NFL picks:

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Indiana Pacers at Cleveland Cavaliers odds, picks and prediction – USA TODAY Sportsbook Wire

Posted: at 1:31 am

The Indiana Pacers (14-22) visit the Rocket Mortgage FieldHouse Sunday for a 6 p.m. ET game with the Cleveland Cavaliers (20-16). Below, we look at the Pacers vs. Cavaliers odds and lines, and make our expert NBA picks, predictions and bets.

Indiana has lost four of its past five games (2-3 against the spread), including three straight to the Chicago Bulls (twice) and Charlotte Hornets. The Pacers are 2-3 Over/Under in the stretch.

Cleveland has also lost four of five and three straight games (1-4 ATS) with a 3-2 O/U. The past three losses have come against the New Orleans Pelicans, Washington Wizards and Atlanta Hawks.

Odds provided by Tipico Sportsbook; accessUSA TODAY Sports Scores and Sports Betting Odds hub for a full list. Lines last updated at 1:14 p.m. ET.

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Pacers

Cavaliers

Deposit $10 or more, get $100 in instant bet credits at Tipico Sportsbook! New customer offer in CO and NJ. 21+, see Tipico.com for Terms and Conditions. Place your legal, online sports bets at Tipico. Lets make this interesting. Bet now!

Cavaliers 108, Pacers 103

PASSwith a heavy lean to the Cavaliers (-145) because I like Cleveland in this spot and am willing to lay the points.

But given how terribly Cleveland has played recently and some of its costly injuries, the -145 is a little out of my price range.

However, I do endorseBETTINGthe CAVALIERS (-135) FIRST-HALF MONEY LINEbecause they have played well in the first half of their past three losses before squandering those games in the second half.

Over the past three games, the Cavs have a plus-6.0 first-half scoring margin but a minus-14.0 worst second-half scoring margin. The Pacers have a minus-11.0 first-half scoring margin during their current three-game slide.

TheCAVALIERS (-135) FIRST-HALF MONEY LINEis my favorite wager in this game.

LEANto the CAVALIERS -2.5 (-120)only because their first-half money line is my favorite wager in this contest.

What should be a strength for Indiana in this game backcourt/guard play has been neutralized by a COVID-19 outbreak. The No. 2 and No. 3 Pacers in terms of adjusted on/off net rating Brogdon and Lamb are sidelined on the NBAs health and safety protocols.

Furthermore, the Pacers have been awful on the road this season. Indiana is 3-13 SU on the road with the 21st-ranked non-garbage time net rating at minus-3.9 points per 100 possessions and the fourth-worst spread differential at a minus-2.5 ATS margin.

Again, its more ofaLEANto theCAVALIERS -2.5 (-120), but Cleveland is definitely the right side in this game.

PASSsince my prediction aligns pretty closely to Tipicos projected total, so theres no value in betting the O/U. If anything, Id lean to the Under, but all the value has been sucked out of that number.

The look-ahead total for the Pacers-Hornets was set at 214, but all the Under money has steamed the total down to the current price, so wed be getting the worst of the number.

There was value in Under 214, but there is no value in Under 210.5 (-115).

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Bet Risk-Free on the NFL Defensive Player of the Year – Heavy.com

Posted: at 1:31 am

GettyTJ Watt of the Steelers leads the NFL with 17.5 sacks.

With two weeks left in the NFLs regular season, the Defensive Player of the Year race is shaping up to be one of the tightest of all the end-of-year awards.

The FanDuel Sportsbook has the most recent odds up and it can be any number of players, including T.J. Watt, Micah Parsons, Trevon Diggs, Aaron Donald, Myles Garrett, and more, to take home the honor.

If you were wondering, yes, this is a bet you can place online.

FanDuel Sportsbook, a Heavy partner, is running a promotion for new users that guarantees a risk-free first bet up to $1,000. What that means is if your initial online bet with FanDuel doesnt win, your losing wager will be refunded in the form of a free bet in the amount you lost. Your first wager doesnt need to be on the NFL DPOY award; it can be any bet in any sport.

To get in on the action, you just need to sign up. Heres how you do that:

1) Create a FanDuel Sportsbook account.

2) Deposit funds into your account (a minimum of $10 is required).

3) Place the bet of your choice in any sport youd like.

Claim this offer

If you want to bet online, you must be at least 21 years old and physically present in one of the following 12 states: Arizona, Colorado, Connecticut, Illinois, Indiana, Iowa, Michigan, New Jersey, Pennsylvania, Tennessee, Virginia, or West Virginia. You dont need to reside in one of those states; you just need to be located in one if you want to wager online.

The FanDuel Sportsbook has 11 players listed as candidates for NFL Defensive Player of the Year which can bet on.

Here are the players you can wager on and their odds to win:

T.J. Watt, the younger brother of three-time Defensive Player of the Year J.J. Watt, leads the NFL with 17.5 sacks and hes missed to two games. FanDuel Sportsbook has him as the favorite at +185. But rookie Micah Parsons of the Cowboys is right behind him at +200. Parsons has dominated with 13 sacks, 60 solo tackles, and three forced fumbles.

Parsons teammate, cornerback Trevon Diggs, leads the NFL with 11 interceptions, two of which he has returned for touchdowns. His current odds to win the DPOY are +750.

Three-time Defensive Player of the Year and reigning winner, Rams DL Aaron Donald, is having another impressive season with 12 sacks and three forced fumbles. His odds to win the award are +800.

Rounding out the top five candidates is Browns defensive end Myles Garrett (+1200), whos tied for third with 49ers DE Nick Bosa (+2000) at 15.0 sacks apiece.

Create a FanDuel Sportsbook account

Here are some other Defensive Player of the Year tidbits:

See the rest here:

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Chargers Opening Odds: Bolts open as 3-point favorites over the Raiders – Bolts from the Blue

Posted: at 1:31 am

After their stellar victory over the Broncos, the Chargers have opened up as three-point favorites on the road next week in Las Vegas, according to DraftKings Sportsbook. The over/under is currently set at 48.5.

The Bolts needed a win this week to keep their playoff hopes alive for another week and they did it convincingly with a 34-13 drumming of Denver at home. The Raiders also did what they needed to stay alive as they took down the Colts 23-20.

The Raiders will enter next weekends game with the leagues 12th-ranked offense (364.9 yards) and the 12th-ranked defense (330.8). On the other side, the Chargers own the leagues fourth-ranked offense and the 22nd-ranked defense.

In their first matchup back in week four, the Chargers beat the Raiders 28-14 in a lopsided game at SoFi Stadium.

With a playoff spot on the line, both teams are going to get each others best shot.

Odds/lines subject to change. T&Cs apply. See draftkings.com/sportsbook for details.

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Chargers Opening Odds: Bolts open as 3-point favorites over the Raiders - Bolts from the Blue

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Diagnostic odyssey: The lonely road walked by thousands of Coloradans with rare disorders – Colorado Springs Gazette

Posted: at 1:28 am

When Keegan Joines was born as a low-birthweight baby, his parents saw the rough start as a mere bump in the road.

He plumped up quickly and everything seemed fine, said his mom, Susan Joines, an elementary school assistant and pediatric nurse by trade who lives in Castle Rock.

But by the time he was a year and a half, the Joineses were noticing developmental delays, including in walking and speech. A year later he would be diagnosed with Type 1 diabetes, an autoimmune disorder that destroys the bodys ability to create insulin, a vital hormone that allows the body to use glucose for energy.

We noticed more global abnormalities and we always just kept thinking, Something is related here. These are not all separate instances occurring.

Little did they know that, half a decade later, Keegan would be diagnosed with a rare genetic disorder KCNJ11, which affects the pancreas and the brain, resulting in developmental delay and juvenile-onset diabetes; the diagnosis was one of only 30 identified cases in the world at the time similar to his.

Even with the diagnosis, the search for answers continues, as the Joineses await therapies that could unlock his potential, allowing him to develop beyond the kindergarten-to-first grade level he functions at as a 10-year-old or could have no effect at all.

Unfortunately we dont know what his future is and you never can, even with a well-researched disorder, his mom said. Of course, the skys the limit for these kids. But, without having much research, we just dont know what to expect.

Theres just not enough kids like him to know.

Diagnostic odyssey

Alone, rare disease can be isolating. The U.S. National Institutes of Health defines a rare disorder as one that affects fewer than 200,000 people nationwide a definition created by Congress in the 1983 Orphan Drug Act, which established financial incentives for drug companies to develop medications for such conditions.

Collectively, however, rare is common, with approximately 7,000 known diseases affecting an estimated 25 million-30 million Americans nearly 10% of the population, according to the National Human Genome Research Institute. Worldwide,263 million to 446 million people are affected by rare disorders at any point in time between 3.5% and 6% of the global population, according to a 2019 article in the European Journal of Human Genetics.

With nearly 1 in 10 Americans and Coloradans affected by rare disorders, we likely encounter them daily at schools, at grocery shops, at places of worship, at workplaces. Some prefer to keep quiet, realizing the likelihood of being misunderstood is much greater than that of finding common ground. Others become vocal advocates, on a quest to raise awareness of a disease very few if any others have been diagnosed with. Others yet are oblivious to their disorders, on a quest for an answer to their health maladies that may never materialize.

The quest for a diagnosis the Joineses were on seemed foreign, rare, esoteric. But patients with rare disorders, on average, spent six to eight years and often untold thousands of dollars searching for an answer. While waiting, there's the uncertain no man's land of "undiagnosed," a label that can call into question one's symptoms and even one's sanity.

And when a diagnosis is finally received, it's not always the right one.

It's hard to diagnose people (with rare disorders) it takes a really long time, said Dr. Anne Pariser, director of the Office of Rare Diseases Research at the National Institutes of Healths National Center for Advancing Translational Sciences.

This happens so often in rare diseases. We call it the diagnostic odyssey.

Beyond frustration, accompanying the diagnostic odyssey are consequences that have the potential to take a toll on health and finances.

Being undiagnosed carries a substantial monetary and also human cost, Pariser said. People are treated for the wrong disease. They don't receive therapies that may be available, or there arent specific ways that we can intervene to lessen suffering.

Pariser cited a 2019 study by the EveryLife Foundation for Rare Diseases that estimated the economic cost of nearly 400 rare diseases in the U.S. that year at nearly $1 trillion, surpassing the estimated economic burdens for diabetes, heart disease and cancer among the costliest common chronic diseases.

Theres a mental cost, as well. Without a diagnosis, Susan Joines spent years attributing Keegans issues to pregnancy complications.

She blamed herself.

I had to go on beta blockers just for myself to survive because I wasnt profusing to him well, she said. He just wasnt thriving super well in my body. As we started seeing the gap widening between him and his peers, I was just like, I should have done better. That mom guilt just never goes away, because it always feels like you could do more. Even with your neurotypical kids, you always feel like youre not doing things well enough.

Its especially hard with a kiddo with extra needs because there's always so much you feel like you should or could be doing.

Complicating each patients search for answers is the reality that every rare-disease patient is unique. A patients symptoms can be caused by a single gene or chromosomal abnormality; multiple genetic errors; nongenetic factors; or a combination thereof. Even those considered to have the same disorder can have similar but distinct genetic errors that result in different presentations and health outcomes.

When we think about rare disease, each patient is essentially unique in their characteristics and that makes studying them, diagnosing them and understanding the public health impacts of rare disease patients very, very challenging, said Melissa Haendel, chief research informatics officer at the University of Colorado Anschutz Medical Campus and director of the National Center for Data to Health.

Case in point: Youll find differing estimates of the number of rare diseases, depending on the source and the country the data originates in more than 7,000, according to the National Institutes of Health; between 5,000 and 8,000, according to the World Health Organization; more than 6,000, according to Rare Diseases Europe.

Why do we care about how many rare diseases there are? Despite having 10% of the population potentially having a rare disease, the inability to count them really underlies an inability to identify them in the first place,Haendel said.

Its not the count that we care about. The fact that we cant count them is an indication of our inability to understand and define them, to diagnose them, to treat them.

Zebras, not horses

For Elliott Wellnitz, 3, of Colorado Springs, the diagnostic odyssey was blessedly short seven or eight months, as his mom, Christine, recalls.

A few things were off during the pregnancy Christine had only one artery in her umbilical cord instead of two, and Elliott was born prematurely but we didnt know at the time we were going to have a special-needs kid, she recalls.

But soon medical providers began to point out other anomalies a widely spaced big toe, port wine stains under his lips, an abnormally large head.

A basic genetic test showed no abnormalities, nor did a more sophisticated test.

The Wellnitzs were sent home with a tank of oxygen, a myriad of specialist appointments and no answers.

Several months later they learned he had Megalencephaly-capillary malformation syndrome an exceedingly rare genetic syndrome involving developmental delay, intellectual disability, poor muscle tone, parts of the body that are larger than usual and epilepsy. The disorder places patients at risk of fluid buildup in the brain and of cancerous tumors.

For Christine, the diagnosis has meant wearing more hats than parents already wear those of honorary therapist and educator, and that of an actual nurse.

When we got out of the hospital, no one pointed me in the right direction, said Christine, a hospice nurse whose husband stays home and cares for their son. I kind of had to figure it all out on my own. To me, thats the most frustrating aspect of this journey.

Susan Joines ran a group for special needs families where she lived last, working as a parent liaison to the early childhood education system. She found that many parents of children with rare disorders are desperate for answers and support and help.

I feel like very rarely do we get all three of those or even two out of three of those from providers.

Shes encountered a wide variety of personality types in doctors over countless visits, from the kind who say, Wait, give it time, theyll be fine, and then theyre 16 and end up with an autism diagnosis to the ones who say, Here you go, heres your childs list of problems, and well see you later, completing writing a kid off.

The former have served as roadblocks, the latter sources of immense hurt and devastation.

A psychologist once administered an IQ test on Keegan without Susan's permission or understanding, then delivered dismal news.

"Essentially they just said he was in the bottom 15th percentile, so probably under 40," she said of his score. "Just basically, 'Here is his IQ, and most likely he'll never live alone, he'll never be able to have a job or live independently,' and they just kind of left it there. We were like, 'Should we follow up with you?' They were like, 'No, this is it.'

"I feel like they gave him a life sentence."

With myriad rare disorders and such fuzzy definitions of many, its often a struggle to find a provider equipped to diagnose, no less treat, a rare disorder.

The problem at least partially originates in medical schools, where doctors in training are taught that when you hear hoofbeats, think horses, not zebras common things occur commonly. Dont give somebody a rare diagnosis if they probably have a common problem, Pariser said.

Providers need to be trained to look for zebra triggers, she said, invoking a symbol of the rare disease community: zebras, which each have a unique stripe pattern, as humans do fingerprints.

We want (doctors) to think of zebras, and we want them to think of zebras when they start seeing certain clusters of things: young age, high (medical system) utilization, multiple consults, having to travel great distances. Also, some of these what we call basket (medical) codes, like developmental delay or motor delay.

Rare diseases we have many, many diseases that affect small numbers of patients each and very few treatments. But when you consider this collectively, it really is a large public health problem.

How long is my child going to live?

Even with a diagnosis, the future is uncertain for Keegan.

Now 10, he performs in school three to four years behind grade level, even with extensive developmental services, Susan said.

Weve exhausted just about everything we think we can think to do for him. He struggles greatly with academics. He still cant write his name. He still isnt reading well," she said, adding that, regardless, Keegan is a joyful, humorous child who loves life, his family, school and friends.

To get him to recognize the word the thats a (school) goal for him, to have an 85% success rate on just recognizing that word. Hes in a severe special-needs program. We arent seeing progress like we hope. Just from the little bit we do know, early to late elementary school is typically, developmentally, where they see him maxing out."

For Christine Wellnitz, receiving a diagnosis was comfortingbut it didnt come with a road map of what to expect.

It was definitely a huge relief when there was actually a name for what he had, she said. I cried. But there wasnt a whole lot of information, even on life expectancy.

How long is my child going to live?

A Facebook group Christine joined, for those affected and their families, has a couple of older patients in their 30s and 40s, and that makes me happy.

But beyond that, we dont really know, and thats pretty scary. I always tell my husband, 'Right now were doing pretty good, and things are going pretty well, but I never hold my breath,' because every time I think that, something else pops up, or we need to see another specialist.

Elliotts pediatrician is supportive but doesnt have much to offer in the way of specialized knowledge.

Our pediatric doctor basically just goes with whatever I want, Christine said. If I call and say, I think I need this, she usually does it. I think part of it is because Im a nurse. I love our pediatric doctor, but I feel like there should be more specialists in town.

I really have no idea exactly where my child is when it comes to development. "I just know that hes somewhat delayed.

When it comes to enrolling her child in school and ensuring he receives proper education and support, I dont even know what the next steps are. I hear the school districts arent great when it comes to working with special needs children, and that just puts fear in my heart.

"I havent heard of one good district in this town, unfortunately."

For Susan Joines, looking to the future is equally tough.

My husband and I frequently think we might be forever-nesters, she said. Theres such a grieving process we will never put a cap on him, of course, but it is a process of this potential grief of maybe not achieving the life we hope for him. He may never drive. He may never graduate. He may never have a job. He may never get married. We may never see grandkids from him.

"Maybe we will," she added hopefully.

Susan leans on her personal faith in the fact that God made her son for a purpose and has plans for him.

"But its definitely not without grief," she said. "Its the heaviest and hardest thing we deal with on a regular basis."

Continued here:
Diagnostic odyssey: The lonely road walked by thousands of Coloradans with rare disorders - Colorado Springs Gazette

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