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What is Angelman syndrome? Colin Farrell’s son is living with this rare disease

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What is Angelman syndrome? Colin Farrell’s son is living with this rare disease

Actor Colin Farrell is launching a new foundation to raise awareness of a rare genetic condition called Angelman syndrome, so that his son and others with the disorder will have more support and resources as they transition into adulthood.

“I want the world to be kind to James,” Farrell, 48, told People magazine ahead of his son’s 21st birthday in September.

“All the safeguards that are put in place, special ed classes — that all goes away, so you’re left with a young adult who should be an integrated part of our modern society and, more often than not, is left behind.” 

COLIN FARRELL TEARS UP WHILE SPEAKING ABOUT HIS 20-YEAR-OLD SON WITH RARE NEUROGENIC DISORDER: ‘HE’S MAGIC’

What is Angelman syndrome?

The syndrome was first described in 1965 by physician Dr. Harry Angelman, according to the National Organization for Rare Disorders (NORD).

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It is a disorder of the nervous system, which helps control movements, thoughts and behaviors, as stated by Cleveland Clinic.

Actor Colin Farrell is launching a new foundation to raise awareness of a rare genetic condition called Angelman syndrome, which affects his son — pictured with Farrell, at right, in 2009. (Getty Images)

Most cases are caused by a random genetic change during early development, which means those who are affected usually have no family history of the disease, the National Institutes of Health (NIH) adds.

STIFF PERSON SYNDROME PATIENTS SHARE WHAT IT’S LIKE TO LIVE WITH THE RARE DISEASE

“Angelman syndrome is a complex neurodevelopmental disorder resulting from the loss of function of a specific gene called UBE3A, which plays a crucial role in brain development,” Dr. Issac Molinero, pediatric neurologist at Ochsner Children’s Hospital in New Orleans, Louisiana, told Fox News Digital.

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The genetic changes that occur with Angelman syndrome lead to significant challenges, including severe intellectual disability, communication difficulties and characteristic behavioral patterns, such as frequent laughter and smiling, according to Molinero.

Model Kim Bordenave and actor Colin Farrell, parents of son James Farrell, are pictured at the 75th Annual Academy Awards at the Kodak Theater on March 23, 2003, in Hollywood, California. (Getty Images)

Dr. Dana Price, pediatric neurologist and director of Angelman Clinic at NYU in New York City, described the disorder as a “spectrum.”

It can include “low muscle tone, developmental delay, poor gait, seizures (ranging from febrile seizures to refractory epilepsy), constipation, poor sleep and challenging behavior,” she told Fox News Digital in an email.

Developmental delays

The condition causes delays in development for the children it affects.

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Newborn babies may have trouble latching on or swallowing milk, and after a few months, they may not be able to lift their heads, according to Cedars Sinai.

They may also miss the milestones of sitting up alone, crawling, standing up by themselves or taking their first steps.

THE GIRL WHO CAN’T SMILE: HOW A RARE DISORDER BECAME A YOUNG WOMAN’S ‘GREATEST GIFT’

Infants can develop microcephaly, a condition where their heads are characteristically smaller compared to other children of the same age, per NIH.

“Generally, developmental delays associated with Angelman syndrome will become noticeable around six to 12 months of age,” Molinero told Fox News Digital.

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Children with the disorder often learn to communicate in other ways, like gesturing, and may be able to understand a simple conversation. (iStock)

Silence is another hallmark clue, experts say. 

The baby may be able to say words like “Dada” and follow simple commands, but won’t be able to put together complete sentences or have a verbal conversation, according to Cedars Sinai.

At age 2 or 3 years old, some children may start to have seizures, Mayo Clinic notes.

The rare disorder only affects roughly 500,000 people worldwide.

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One typical hallmark of the syndrome is unprovoked fits of laughter, along with frequent smiling and hand-flapping movements, according to NIH. 

Children with the disorder often have short attention spans, with most having difficulty sleeping or needing less sleep than normal.

PENNSYLVANIA MOM SEEKS ‘PERFECT MATCH’ BONE MARROW DONOR TO CURE DAUGHTER’S RARE DISORDER: ‘CRUCIAL NEED’

The sleep issues tend to improve as the child gets older, but the limited speech, intellectual disabilities and seizures may continue throughout life.

Although most people with the condition can’t speak, they learn to communicate in other ways, such as gesturing, and may be able to understand a simple conversation, according to NORD.

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Diagnosis and treatment

Doctors diagnose the condition based on blood tests that look for the genetic mutation, experts say.

The syndrome is often misdiagnosed, as initial symptoms can be confused with more well-known diseases like autism or cerebral palsy, according to the Angelman Syndrome Foundation.

Children are often not diagnosed until they are 3 or 4 years old, when they have already started pre-school. (iStock)

Children are often not diagnosed until they are 3 or 4 years old, when they have already started pre-school, experts say.

The rare disorder only affects roughly 500,000 people worldwide, Molinero noted.

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Those with the condition have a normal life expectancy, according to NIH.

Individualized treatment

“Although there is no definitive cure for Angelman syndrome, proactive early intervention through therapies, educational support and community resources can significantly enhance the quality of life for affected individuals and their families,” Molinero said.

      

Depending on symptoms, treatments may include various medications for seizures, sleep, mood, reflux and constipation, Price added.

Those with the disorder may also receive various types of therapy to learn how to communicate non-verbally, to manage hyperactivity and to improve balance. (iStock)

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Those with the disorder may also receive various types of therapy to learn how to communicate non-verbally, to manage hyperactivity and to improve balance.

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“This is a very exciting time to work with the Angelman Community, because drug companies are working to develop precision medicine to turn on the missing gene (UBE3A),” Price said.

“Genetic treatment with precision medicine is such a revolutionary prospect — for the first time, we would be treating the disease, not the symptoms.”

For more Health articles, visit www.foxnews/health

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Those who have a family member with Angelman Syndrome or are affected themselves can visit an Angelman Clinic or the Angelman Syndrome Foundation’s website at https://www.angelman.org.

Fox News Digital reached out to the Colin Farrell Foundation for comment.

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Youth Suicides Declined After Creation of National Hotline

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Youth Suicides Declined After Creation of National Hotline

Over the two and a half years following the 2022 rollout of the 988 national suicide prevention hotline, the rate of suicides among young people in the United States dropped 11 percent below projections, decreasing most sharply in states with a higher volume of answered 988 calls, a new study has found.

The findings, published today as a research letter in JAMA, compared suicide deaths from July 2022 to December 2024 with sophisticated mathematical projections that were based on historical trends. This yielded good news, with 4,372 fewer suicides of adolescents and young adults, ages 15 to 34, than had been projected.

To ensure that the decline was related to the use of the hotline, researchers at Harvard Medical School teased out the trends in states with high and low usage of the hotline. The findings were striking: The 10 states with the largest increases in 988 calls experienced an 18.2 percent reduction in observed suicides compared with expected suicides; in the 10 states with the lowest uptake, the reduction was smaller, 10.6 percent.

The results suggest that the government’s investment in the 988 rollout has translated into “a measurable reduction of deaths,” said Dr. Vishal Patel, a resident physician at Brigham and Women’s Hospital and one of the authors of the study.

“What our study has added,” he said, “is evidence for the deeper benefit of the program, and that is, that at the population level, among young people at least, suicide mortality is lower than it would have been without the program.”

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He added, “The implication of that is that sustained funding for this program matters.”

The United States rolled out the three-digit hotline with bipartisan support in July 2022, replacing a 10-digit hotline number, and augmented it with a $1.5 billion investment in crisis center capacity. Since its inception, the service has fielded more than 25 million contacts, according to the Department of Health and Human Services. The agency has asked Congress for $534.6 million to fund the program for 2027.

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Last summer, the Trump administration terminated one element of the hotline, the Press 3 option for L.G.B.T.Q.+ callers. The Substance Abuse and Mental Health Services Administration said that the Press 3 option was being discontinued because it had exhausted its funding from Congress and that the hotline would “focus on serving all help seekers.”

But advocacy groups and policymakers protested the decision, and in testimony before the Senate on Tuesday, the health secretary, Robert F. Kennedy Jr., said his agency was planning to restore the Press 3 option.

Dr. Patel said his group had become curious about measuring the program’s effectiveness after Press 3 was eliminated. While call volume and satisfaction surveys suggested that 988 was succeeding, he said, the harder question was, “Did the creation of this 988 program, the transition from the old hotline to this hotline, actually move the needle on suicide mortality?”

Experts said it was difficult to tease out the beneficial effect of 988 from other things that changed in 2022, the year that the new hotline was created. Around that time, suicide prevention programs were being introduced in schools, in faith communities and on social media, but more important, the pandemic was ending.

“We were finally out of this crazy time, and there was a sense of optimism and hope,” said Jonathan B. Singer, a professor of social work at Loyola University Chicago and a co-author of “Suicide in Schools.” He called the downward trend in youth suicides “encouraging, but it is tempered by the fact that we don’t have a good explanation as to why.”

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The authors acknowledged that their findings could not account for the influence of social and economic changes, changes in mental health services or public awareness about services.

But they did make comparisons to exclude other possible explanations. The authors looked for similar effects among American adults over 65, who are less likely to use the hotline. In that group, there was a reduction in suicides that exceeded expectations, but it was smaller, at just 4.5 percent.

To ensure the decline in suicides did not reflect a general improvement in young-adult mortality, the researchers tracked cancer deaths, and found there was no change. They also looked at the rates of suicide among young people in England, where no change had been made to the national crisis line in that time period; they found no reduction in youth suicides there.

Hannah Wesolowski, chief advocacy officer for the National Alliance on Mental Illness, said she was persuaded that the hotline had contributed to the improvement in suicide rates, in part because it did not appear among English youths or in older Americans.

“To me, that really helps hone in that this might really be the differentiator,” she said. “We are seeing potentially a pretty significant decline in suicides among young people. For public policy, this is strong evidence to double down on that we are doing.”

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Emily Hilliard, a senior press secretary at the Department of Health and Human Services, said H.H.S. and SAMHSA are “committed to ensuring that all Americans have access” the 988 line, which she said “clearly provides lifesaving support, helping millions of people every year.”

If you are having thoughts of suicide, call or text 988 to reach the 988 Suicide and Crisis Lifeline or go to SpeakingOfSuicide.com/resources for a list of additional resources.

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Highly contagious stomach bug spreads fast, hitting certain patients hardest

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Highly contagious stomach bug spreads fast, hitting certain patients hardest

NEWYou can now listen to Fox News articles!

A highly contagious digestive virus is surging across the U.S., experts warn.

Rotavirus, a double-stranded RNA virus, causes acute gastroenteritis — inflammation of the stomach and intestines — which can lead to severe diarrhea, vomiting, fever and stomach pain.

The virus primarily affects infants and young children, but there have also been outbreaks in elderly populations, such as nursing homes.

AT LEAST 46 CHILDREN DEAD AMID MEASLES OUTBREAK AS VIRUS SPREADS GLOBALLY

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Data from the Centers for Disease Control and Prevention shows that in the week ending April 4, out of 2,329 rotavirus tests, 7.3% were positive for the infection. Last year’s highest infection rate was 6.77% as of the week ending April 19.

Rotavirus, a double-stranded RNA virus, causes acute gastroenteritis — inflammation of the stomach and intestines — which can lead to severe diarrhea, vomiting, fever and stomach pain. (iStock)

“We’re seeing a lot of rotavirus in the wastewater right now,” Dr. Marc Siegel, Fox News senior medical analyst, confirmed to Fox News Digital. “Testing for rotavirus is way down, but the percentage of positive tests is up.”

While the virus typically peaks in the spring, it is not currently slowing down, he noted.

Why cases may be rising

Patricia Pinto-Garcia, M.D., a medical editor at GoodRx who is based in California, said there are several possible reasons for the rotavirus spike.

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“Vaccine rates are down overall among young children, as they decreased during COVID,” she told Fox News Digital. “This means there’s a growing number of infants and young children who are vulnerable to infection.”

The rotavirus vaccine series must be completed by the time a child is 8 months old, she noted.

HEALTH ALERT ISSUED FOR DENGUE OUTBREAKS SPREADING IN TRAVEL HOTSPOTS

As a result of the declining vaccinations, herd immunity isn’t protecting vulnerable children, according to Pinto-Garcia. “Children who haven’t finished the vaccine series yet, are too young to get vaccinated, or can’t get the vaccine due to medical illness are more likely to get exposed to the illness because other children aren’t vaccinated,” she said.

Siegel noted that before the vaccine became available, rotavirus resulted in 55,000 to 70,000 in the U.S. per year.

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“Vaccine rates are down overall among young children, as they decreased during COVID,” a doctor told Fox News Digital. “This means there’s a growing number of infants and young children who are vulnerable to infection.” (iStock)

“I am concerned that the vaccination rate has been declining over the past seven years and is continuing to decline in the current climate of vaccine skepticism,” he said.

Surveillance methods are also much better than they used to be, Pinto-Garcia noted, which means public health experts are able to pick up and track cases better than ever before.

HOW LONG YOU’RE CONTAGIOUS WITH THE FLU — AND WHEN IT’S SAFE TO GO OUT

“But we see that rotavirus-related healthcare visits are also up, so improved detection is not the only reason we are seeing this spike,” she said.

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The COVID pandemic also disrupted the pattern of infections, according to Pinto-Garcia, so it’s “tricky” to compare the current levels against older cycles.

“It’s possible that what we are seeing is still some post-pandemic rebound, but it’s unlikely that this year’s pattern is fully explained by just this factor,” she added.

Transmission and risk

Dr. Zachary Hoy, a pediatric infectious disease specialist at Pediatrix Medical Group based in Nashville, Tennessee, often sees young patients with rotavirus.

“Rotavirus is spread via the fecal-oral route, meaning that a person comes into contact with virus droplets from contact with other children or adults, or from contact with objects such as toys that have been contaminated with the virus from someone who is sick,” he told Fox News Digital. “This can lead to outbreaks, especially at schools where many young children share the same toys.”

“It’s possible that what we are seeing is still some post-pandemic rebound, but it’s unlikely that this year’s pattern is fully explained by just this factor.”

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Rotavirus is associated with many dehydration cases in the hospital due to the degree of diarrhea, according to Hoy.

In some severe cases, the virus can lead to seizures due to electrolyte imbalances from dehydration and loss of electrolytes in the stool.

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“Younger children do not have the reserves that older children and adults have, so they can become more dehydrated quicker and develop more severe electrolyte imbalances, leading to more severe infections,” Hoy said.

“Patients with problems with their immune systems or on medications that can decrease their immune systems can have more severe and prolonged infections, too.”

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Treatment and care

Because rotavirus is a viral infection, antibiotics are not effective against it. There is no specific antiviral treatment for the condition, with doctors typically recommending supportive care.

“The mainstay of treatment is hospitalization for rehydration via intravenous (IV) fluids,” Hoy told Fox News Digital. “Sometimes it can take up to two to three days of IV fluids to help get patients rehydrated.”

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Blood draws are often necessary to evaluate patients’ electrolyte levels, such as sodium, potassium, calcium and magnesium, according to the doctor.

“If these electrolyte levels are significantly low, sometimes patients need special IV solutions or individual electrolyte medications,” he added.

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“The mainstay of treatment is hospitalization for rehydration via intravenous (IV) fluids,” a doctor told Fox News Digital. (iStock)

Dr. Daniel Park, medical director of the Pediatric Emergency Department at UNC Health in Chapel Hill, North Carolina, noted that most children recover with supportive care, but parents should seek medical attention if a child shows signs of dehydration. Those include decreased urination, lethargy or inability to keep fluids down.

“While rare, rotavirus can be life-threatening in vulnerable populations, especially very young infants or children with underlying medical conditions,” Park told Fox News Digital.

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Prevention strategies

Given the lack of antiviral medications for rotavirus, doctors emphasize the importance of prevention, primarily the vaccine.

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There are two rotavirus vaccines – Rotateq (a three-dose series) and Rotarix (a two-dose series). They are given starting at age 2 months as oral drops, not injections, according to Hoy.

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“It’s important to get the rotavirus vaccines on schedule, because these younger infants are at greatest risk if they get rotavirus,” he advised.

Other recommended prevention methods include handwashing with soap and water.

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How Well Will You Age? Take Our Quiz to Find Out.

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How Well Will You Age? Take Our Quiz to Find Out.

Every day we’re faced with a zillion small choices: Go to sleep early, or watch one more episode of that Netflix drama. Call an old friend to catch up, or cruise social media. Of course, no single action will guarantee a long, healthy life or doom you to an early grave. But those little daily decisions do add up, and over the long term they can make a difference when it comes to both your longevity and your health span, the amount of life spent in relatively good health.

Scroll through this theoretical “day in the life” and select the option that best fits your typical day. Not every situation will apply perfectly, but think about which choice you’d be most likely to make. This isn’t a formal scientific assessment. The goal here isn’t to assign you a “good” or “bad” score, but to help you understand the central factors that shape the way we age and how long we live.

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