(WASHIGTON) — The National Institutes of Health has launched a website MakeMyTestCount.org which allows people to anonymously report the results of any brand of at-home COVID-19 test.
The website is a collaboration between the NIH and a healthcare technology company, CareEvolution.
Data collected is anonymous and sent to public health systems that receive test results from laboratories and doctor’s offices. Users provide general information such as age and zip code and have the option to include race, ethnicity, sex, and symptoms, but it is not required.
Given the rise of at-home tests, accurately tracking the number of COVID-19 cases has become increasingly difficult. This new website may help provide scientists with a clearer picture of how many people are testing positive and may not require medical care which would normally alert public health systems of the positive test. More accurate data may allow public health departments to modify responses to address outbreaks and spread.
A study done in March suggested at-home test use varies by demographics. COVID at-home test use was highest among persons who identified as white, adults aged 30–39 years, those with annual household incomes of $150,000, and those with postgraduate degrees.
(WASHINGTON) — The number of abortions performed in the U.S. decline in 2020, according to new data from the Centers for Disease Control and Prevention.
The annual report, published Wednesday by the CDC, looks at how common abortion is in the United States and who is getting the procedure.
In total, 620,327 abortions were reported during 2020, a 2% decline from 2019. This data includes every state aside from California, Maryland and New Hampshire.
The rate of abortions also declined to 11.2 per 1,000 women between ages 15 and 44 in 2020, a drop from 11.4 per 1,000 the year before.
Women in their 20s accounted for more than half of all abortions in 2020 at 57.2%. Specifically, women between ages 25 and 29 made up 29.3% and women between ages 20 and 24 made up 27.9% of those who had an abortion.
In addition, of all women who had abortions that year, 86.3% were unmarried and 60.9% already had at least one child, according to the report.
Comparatively, teenagers under age 15 and women aged 40 or older accounted for the fewest abortions in 2020 at 0.2% and 3.7%, respectively.
When looking at abortions in the U.S. by race and ethnicity, large disparities could be seen.
Although white women and Black women each accounted for the highest number of abortions in 2020 — making up about one-third each — the rates were dramatically different.
Black women had an abortion rate nearly four times higher than that of white women at 24 abortions per 1,000 Black women compared to 6.2 abortions per 1,000 white women.
Additionally, while Hispanic women made up a smaller share of the abortions performed in 2020 at 21%, the abortion rate was 1.8 times that of white women at 11.4 abortions per 1,000 Hispanic women.
According to the CDC, reasons for these disparities include unequal access to family planning services, poverty and mistrust of the medical system.
The report also examined how far along women were when they received abortions. The overwhelming majority of abortions in 2020, 80.9%, were performed at or before nine weeks’ gestation. In 2020, 93.1% of abortions were performed before the second trimester.
About half of all abortions, 51%, were medical abortions in 2020 followed by surgical abortions at or before 13 weeks at 40%.
Additionally, the report discussed abortion trends from 2011 to 2020. Data showed the total number of abortions declined by 15% and the rate per 1,000 women decreased by 18% — with that rate decline seen across all age groups.
Particularly, the decrease in abortion rate was highest among adolescents aged 15 to 19, dropping by 48% between 2011 and 2020.
The authors did not state whether the drop in 2020 occurred because of COVID-19 pandemic restrictions nor did they discuss what may be seen after the Supreme Court overturned Roe v. Wade — which guaranteed the constitutional right to an abortion — this summer.
However, they did write that abortion surveillance is “to help evaluate programs aimed at promoting equitable access to patient-centered contraceptive care in the United States to reduce unintended pregnancies.”
(WASHINGTON) — Measles is an “imminent threat” around the world, according to a new joint report released Wednesday by the Centers for Disease Control and Prevention and the World Health Organization.
Despite a two-dose vaccine that is more than 97% effective at preventing infection being available for decades, gains made at beating back the potentially dangerous childhood disease have been lost during the COVID-19 pandemic.
The report found that in 2021, nearly 40 million children — a record-high — missed a dose of the measles vaccine. Specifically, 25 million missed their first dose and 14.7 million missed their second dose.
“The paradox of the pandemic is that while vaccines against COVID-19 were developed in record time and deployed in the largest vaccination campaign in history, routine immunization programs were badly disrupted, and millions of kids missed out on life-saving vaccinations against deadly diseases like measles,” said Dr. Tedros Adhanom Ghebreyesus, WHO Director-General, in a statement.
“Getting immunization programs back on track is absolutely critical. Behind every statistic in this report is a child at risk of a preventable disease,” the statement continued.
To prevent the disease from spreading and to achieve herd immunity, the CDC and WHO say at least 95% of children need to receive the vaccine.
However, just 81% of children globally have received the first dose and 71% have received the second dose, the lowest coverage worldwide seen since 2008.
Consequently, there were 9 million cases of measles and 128,000 deaths around the world with at least 22 countries experiencing “large and disruptive outbreaks.”
“The record number of children under-immunized and susceptible to measles shows the profound damage immunization systems have sustained during the COVID-19 pandemic,” CDC Director Dr. Rochelle Walensky said in a statement. “Measles outbreaks illustrate weaknesses in immunization programs, but public health officials can use outbreak response to identify communities at risk, understand causes of under- vaccination, and help deliver locally tailored solutions to ensure vaccinations are available to all.”
(Los Angeles) — Two couples have a lot to be thankful for this Thanksgiving and they’re sharing their stories to encourage others to consider giving the gift of organ donation.
Christine “Chris” Morales and Debbie Thompson have been best friends since they were kids. The two grew up together in California and remained close even after they both married.
“We got married a year apart; we got engaged a year apart,” Chris Morales said. “We’ve just done everything together.”
But for years, Chris Morales was keeping a secret, even from her best friend.
In 2015, Morales couldn’t keep the secret anymore and finally decided to tell Thompson that she had a genetic disorder called polycystic kidney disease, which had been damaging her kidneys over time, and needed a new kidney.
When Thompson found out about her best friend’s health issues, she quickly knew what she wanted to do to help.
“I said, ‘Well, you can have mine!'” Thompson recalled. “I didn’t even know what the process was.”
Thompson underwent medical testing and learned she and Morales were a blood type match. After six months, Thompson was cleared to donate her kidney to her best friend. The surgery was a success and Thompson said if she had to do it all over again, she would.
“She calls the kidney little Deb!” Thompson said. “She always says little Deb is doin’ good.”
Then, two years ago, the unthinkable happened again. Morales’ husband, Ron Morales, who has Type 2 diabetes, learned he would also need a kidney transplant.
Even though Ron Morales kept his health struggles a secret initially, Debbie and her husband, Brad Thompson, would later find out and Brad Thompson didn’t hesitate when he gave Ron Morales a call.
“He called me up over the phone and said, ‘Hey, I hear you need some extra body parts,'” Ron Morales recalled.
The two then followed in their wives’ footsteps and went through their own successful surgeries together.
But there were at least a couple of things that weren’t exactly the same. Since the two men weren’t a blood type match, Ron Morales needed to get blood transfusions to prepare his immune system to not reject Brad Thompson’s kidney.
“I said, ‘You can’t call it little Brad, and you can’t bring me flowers on the anniversary like Chris does,'” Brad Thompson joked.
According to the nonprofit United Network for Organ Sharing, nearly 25,000 Americans — a new record — received kidney transplants in 2021 alone.
Ron Morales’ transplant surgeon, Dr. Tsuyoshi Todo, remains in awe of the match between Ron and Brad.
“In the seven or so years I have been doing this, I have never seen anything like this. I think it’s very unique,” he said. “I am glad they were able to find each other.”
(NEW YORK) — With Americans about to celebrate a third Thanksgiving since the start of the COVID-19 pandemic, infectious disease doctors say it may be safe to celebrate with slightly more relaxed rules this year.
“It’s important to just recognize we are in a very different place from two years ago. This population is getting more and more immune,” said Dr. Peter Chin-Hong, an infectious disease physician at the University of California San Francisco.
“The most important thing is having balance. This is a tough time. It’s important to see our family and our loved ones if we can,” said Dr. Rupa Patel, a research associate professor at Washington University School of Medicine.
With multiple viruses circulating this fall including COVID-19, influenza and RSV, infectious disease specialists agreed that basic lessons learned during the pandemic can go a long way in preventing the spread of disease. That includes frequent hand washing, cracking a window for better circulation, staying home when sick and staying up-to-date with COVID-19 boosters and flu shots.
“What [the public] can do is balance risks and benefits. And there is no simple formula,” said Dr. Gregory Poland, director of the Mayo Clinic’s vaccine research group in Rochester, Minnesota.
When it comes to testing before family gatherings, infectious disease experts interviewed by ABC News universally agreed that anyone with cold and flu symptoms should seek a COVID-19 test. Even people without symptoms should consider testing if someone at their gathering is vulnerable to serious illness, including people who are unvaccinated, immune compromised or the elderly.
“Live life, but stay home if you feel sick,” said Dr. Whitney Minnock, director of pediatric emergency medicine at Corewell Health William Beaumont University Hospital.
Always test with symptoms
Experts were split on the need for asymptomatic testing but many agreed that it’s no longer necessary to test before every single gathering, travel or major event.
For most people in most situations, “you don’t need to test unless you have symptoms,” said Dr. Jay Varma, director of the Cornell Center for Pandemic Prevention and Response. With tests no longer free through the federal government, frequent asymptomatic testing may no longer be possible for many families.
“If you are symptomatic, test obviously,” said Dr. William Schaffner, a professor in the division of infectious diseases at Vanderbilt University Medical Center. “This is a communicable disease. No one, as I say, wants to be a dreaded spreader.”
People with any symptoms of any viral illness should stay home. If staying home isn’t possible, people with symptoms should wear a high-quality mask, the experts said.
“I think the right guidance is to isolate for as long as you can, until your antigen test is negative,” Varma said. “Alternatively, wearing a high-quality mask, an N95 mask, and going about daily activities, including potentially being on a plane if you have to, are a reasonable way of minimizing harm to other people.”
Consider testing around the vulnerable
Because many people can spread COVID-19 without showing any symptoms, experts said it’s a good idea to test in situations where vulnerable people might be exposed.
“If you are going to be around people who are more vulnerable … you might want to [test] so that you can prevent that from happening,” said Chin-Hong.
Added Patel: “I think the responsibility of testing is … where am I going, who is the audience and where have I been?”
Similarly, people who are members of those high-risk groups should seek COVID-19 and flu testing at the first possible symptom because treatments work best when given early.
“If you’re in a high-risk group and you develop any kind of symptoms, please be tested, both for COVID and for influenza, because we have treatments for you. We can help prevent your needing to be hospitalized,” Schaffner said.
Take other steps to reduce risk
Although COVID-19 is still serious, it is a risk that many Americans are willing to adopt to resume a semi-normal way of life, according to Varma.
That said, everyone can take concrete steps to minimize risk, including vaccinations and basic prevention tips.
“I think this is the winter that people are going to get together,” said Chin-Hong.
Dr. Amy Arrington, a medical director at Texas Children’s Hospital, said it’s “important to continue the things that we have learned work,” including new COVID-19 booster shots.
“You also have to remember that your actions affect other people,” said Anne Rimoin, Ph.D., professor of epidemiology at the UCLA Fielding School of Public Health. “As we move further and further along out of the most acute phase of the pandemic, it doesn’t mean that risk mitigation measures aren’t worthwhile.”
Even for the vaccinated, COVID-19 infection isn’t always trivial. Many patients will go on to experience long-COVID, or lingering symptoms that can last for months after infection.
“The evidence is increasingly compelling that long COVID can present serious, long-term health consequences,” Rimoin said.
“I think there’s definitely a light at the end of the tunnel but I don’t think we’re there quite yet,” said Arrington. “I hate for us to just loosen the reins [and] go back to a totally pre-pandemic way.”
Added Minnock: “If we head into the holidays and everybody is scared, that is not good for mental health. I plan on being with my family this Thanksgiving. But some important precautions will be part of our celebration.”
(NEW YORK) — Already facing a challenging respiratory season, pediatricians in Ohio are now dealing with another foe: measles.
According to statistics provided to ABC News by the Columbus Public Health Department (CPHD), as of Tuesday afternoon, 19 children have contracted the virus.
Nearly half of these children were hospitalized due to severe symptoms of the infection. Almost half were under 5 years old.
The rate of children requiring hospitalization during this outbreak was nearly double what’s typically seen during measles outbreaks, Dr. Matthew Washam, pediatrician and chief of epidemiology at Nationwide Children’s Hospital in Columbus, told ABC News.
The Centers for Disease Control and Prevention told ABC News that it is deploying a team to Ohio to assist with mitigating the outbreak.
Here’s what to know about the outbreak, why these rare cases occur and how Americans can protect themselves against the virus:
Is measles serious?
Measles is a very contagious disease with the CDC saying every individual infected by the virus can spread it to up to 10 close contacts, if they are unprotected including not wearing a mask or not being vaccinated.
Complications from measles can be relatively benign, like rashes, or they can be much more severe, like viral sepsis, pneumonia, or brain swelling.
“The impression that measles is a trivial infection akin to the common cold with a rash, that is incorrect,” Dr. William Schaffner, a professor of preventive medicine and infectious diseases specialist at Vanderbilt University Medical Center, told ABC News. “Measles is a very nasty virus.”
“Before we had the measles vaccine in the United States, 400 to 500 children died of measles and its complications each and every year. So, measles can make you very, very sick,” he continued.
Am I protected from measles?
The CDC says anybody who either had measles at some point in their life or who has received two doses of the MMR (measles, mumps, rubella) vaccine is protected against measles.
One dose of the measles vaccine is 93% effective at preventing infection if exposed to the virus. Two doses are 97% effective.
Schaffner said there is no reason for anyone who has been vaccinated to receive a booster dose when isolated outbreaks occur.
“If you’ve had those two doses of the measles vaccine, you’re protected essentially for life,” he said.
In 2000, measles was declared eradicated from the U.S. thanks to the highly effective vaccination campaign.
Why did this outbreak occur?
The CDC team deploying to Ohio will also assist with investigating the outbreak’s origins, given that children across 12 schools/daycares have contracted the virus so far.
The fact that these infections occurred over a two-week timespan is throwing another wrench in efforts to track down the outbreak’s origins.
Recent research from the World Health Organization described the “largest continued backslide in vaccinations in three decades” due to missed routine care during the pandemic.
In the U.S., a May study found one-third of American parents reported a child with a missed vaccination due to barriers imposed by the COVID-19 pandemic.
However, according to Kelli Newman, director in the CPHD Office of Public Affairs and Communications, “our investigation so far points to vaccine hesitancy and choosing not to be vaccinated” as the driver for the outbreak.
What is vaccine hesitancy?
Vaccine hesitancy is defined as delaying or refusing vaccination despite their widespread availability.
Accordingly, CPHD’s conclusion so far fits with a troublesome trend sweeping the United States — and beyond.
Even before the pandemic, reluctance around getting vaccines was hitting a fever pitch. Vaccine hesitancy was named one of the top 10 threats to global health by the WHO in 2019.
In the U.S., vaccine hesitancy has been further stoked by politics.
A study by the Colorado Health Institute, a non-partisan research organization, found that COVID vaccination rates across the state were strongly correlated with counties’ political beliefs.
The MMR vaccine has been especially targeted by the vaccine hesitant community. Much of the controversy around the vaccine derives from a now retracted and discredited 1998 study from The Lancet that falsely drew a connection between the shot and rates of autism.
How can we encourage vaccination?
Despite research debunking the Lancet paper, many communities continue to grapple with misinformation around the MMR vaccine.
“Misinformation and disinformation related to vaccines continues and persists,” Washam told ABC News. “These are not conversations that can be had in five or 10 minutes or in a single visit.”
In Ohio, the health department has tried to combat this misinformation by offering walk-in MMR vaccine appointments that include one-to-one counseling with health providers.
Fortunately, despite the increasing frequency of measles outbreaks, vaccine hesitancy still remains the exception rather than the rule. CDC data shows that more than 90% of children were vaccinated against MMR by the age of two. By 17 years old, that share rises to 92%.
However, epidemiologists worry a 10% unvaccinated rate in children is the bare minimum required to stem future outbreaks. They are even more concerned about communities, like that in Ohio, where the vaccination rate is even lower.
“That 90% is not evenly distributed across the country — there are pockets of under vaccinated areas, and those are the areas that are susceptible,” Washam told ABC News. “Measles anywhere in the world is a risk for measles everywhere in the world.”
Schaffner said it is important for local public health authorities to bring trusted leaders, be they political or religious, to speak about the importance of vaccination.
“They can provide them not only information, but a sense of reassurance, a sense of comfort, letting them know that it is the appropriate thing to do for their own children’s benefit, but also for the benefit of the entire community,” Schaffner noted.
Additionally, this winter amid a so-called “tripledemic” of flu, RSV and COVID-19, experts are urging families to ensure their children are vaccinated against the flu to reduce the burden on health systems and prevent any undue harm. Vaccination rates for the flu historically hover around 60%.
“Some families say, I’m going to wait until X or Y or Z date to get the vaccine,” Washam told ABC News. “Well, this might be the year to get it a little sooner.”
(PORTLAND, Ore.) — An Oregon family is overjoyed after welcoming twins born from embryos that were frozen 30 years ago.
“They’ve been a joy to have to us and to their siblings,” dad Philip Ridgeway told Knoxville, Tennessee, ABC affiliate WATE of his new twins, Lydia and Timothy, who now make the Ridgeways a family of six.
The 30-year-old embryos have broken the record for the longest-frozen embryos to ever result in a successful live birth, according to research staff at the University of Tennessee Preston Medical Library. The embryos, which were donated by an anonymous married couple using in vitro fertilization, had originally been frozen in April 1992.
They were successfully thawed, transferred and then delivered, with assistance from the National Embryo Donation Center and Dr. John Gordon, a medical director at Southeastern Fertility in Knoxville, who was the couple’s doctor.
Lydia and Timothy were born on Oct. 31.
“We wanted to be able to go in and find embryos that had been overlooked for reasons beyond their control, that have been waiting so long for a mom and a dad,” Rachel Ridgeway, the twins’ mom, said.
Gordon told WATE, “They specifically requested the embryos that had been waiting the longest. They actually felt called to specifically say, ‘We want the embryos that everybody else has taken a pass on.'”
Scientists have estimated that there are five frozen embryos for every IVF-related live birth in the U.S. According to Gordon, there are more than 1.4 million frozen embryos waiting to be thawed and transferred.
“We just want them to always know that they were chosen, that they are loved,” Rachel Ridgeway added.
(COLORADO SPRINGS, Colo.) — Dr. Laura Trujillo was asleep early Sunday morning when she got the call to go into work at Centura Penrose Hospital in Colorado Springs, Colorado.
At least five people were killed in a mass shooting at nearby Club Q, a nightclub that primarily serves the LGBTQ community.
Of the additional 19 people injured, in what police are investigating as a hate crime, seven were transported to Centura Penrose.
“Because it was the middle of the night and I was on call the 24 hours before, I was actually asleep when my partner called me,” Trujillo, a trauma surgeon at the hospital, told ABC News. “I got the first call a little after midnight. That’s when the word was coming into our systems that it might be possibly more than a few patients.”
Trujillo said there’s a 30-minute grace period from the time backup hospital staff are called to when they arrived, but she said it only took her 15 to 20 minutes to get to Centura Penrose.
“By that time, it was just a few minutes after EMS and the police had dropped off the patients kind of all at once, actually,” Trujillo said. “And so, we had some in the hallway who were more stable and some in the rooms.”
With an event like this, Trujillo said the first step is an assessment to make sure a patient’s breathing, heart rate, blood pressure and circulation are stable and to check the extent of the injuries.
Among patients with gunshot wounds, injuries to the arms and legs are typically less severe than injuries to the chest or abdomen, she said.
After scans to make sure there are few to no internal injuries, patients who are more stable will typically receive bedside care while those who are in critical condition will be rushed to the operating room.
“There were definitely a lot of bodies, a lot of people present, a lot of people working,” Trujillo said. “It was chaotic, but well controlled. Everyone had a role.”
She continued, “Our role as trauma surgeons is to kind of coordinate and oversee all of it. So, my partner and I were kind of spinning through rooms just sort of checking on everybody, making sure people’s vitals were stable, figuring out what imaging they needed met, or where they would be going after the ER.”
Trujillo declined to elaborate more on the injuries the Club Q victims had to prevent identifying patients but said the extent “ran from more worrisome to less.”
As of Monday morning, of the seven patients who initially were taken to Centura Penrose, four have been discharged and three remain hospitalized in stable condition.
To be declared eligible for discharge, Trujillo said patients will get evaluated, if needed, by physical and occupational therapists, to see if they need equipment to leave the hospital or enter short-term rehabilitation.
Additionally, hospital staff will make sure patients’ vitals are stable and their pain is under control.
Trujillo said although she has been trained to respond to patients who are victims of a mass shooting, it’s the first time she’s ever had to do so.
“This is the first mass casualty assistance that my partner and I have needed to be a part of,” she said. “Obviously, we’re used to taking care of a lot of patients at once but it’s something very sobering about it and sad when it happens.”
“You’re always hoping you never have to use these skills. We hate when this happens, but we’re here to serve everybody, and to make sure that everyone’s safe and protected,” she added.
(NEW YORK) — Doctors say some hospitals are reaching their breaking points as cases of flu and RSV continue to rise across the United States.
Respiratory viruses have been surging throughout the country, appearing earlier than usual and rapidly increasing every month.
According to data from the Centers for Disease Control and Prevention, more than 11,000 RSV infections were diagnosed in September 2022, rising to 40,000 for October.
Meanwhile, for flu, cases, hospitalizations and deaths have doubled for the second week in a row, CDC data shows.
This has led to some hospitals running out of beds, being forced to treat children in emergency rooms and hallways and seeing patients that are much sicker than usual compared to past years.
“It’s really unbelievable the number of patients that we have seen,” Dr. Juan Salazar, physician in chief and infectious diseases specialist at Connecticut Children’s Hospital in Hartford, told ABC News. “The number of kids that are coming in, children under the age of five that we have seen come to our emergency department has been like nothing I’ve ever seen in my 25 years practicing here at Connecticut Children’s and frankly, over my 30 years of practicing infectious diseases.”
“It’s been unprecedented, the strain on the staff and the parents and the children and the nurses has been really, truly unbelievable,” he said.
Some hospitals are completely full
Salazar said his hospital has fully reached capacity and has been that way for the last five to six weeks. The emergency department also has many more patients than it has beds.
“So, our emergency department has 45 beds at any given time,” he said. “This past three, four weeks we’ve had 110 kids in the emergency department. So, it’s almost three times as many beds as we have capacity for.”
Salazar said he has had to call on specialty providers who do not usually treat emergency department patients to help ER staff.
Connecticut Children’s is not the only hospital experiencing these circumstances. Cook Children’s Medical Center in Fort Worth, Texas, is also seeing more patients than it has capacity for.
“Not only are the viruses hitting earlier in the year, they’re kind of coming back with a vengeance that we haven’t seen, because we’ve been so isolated for the prior two years,” Dr. Maxie Brewer, a hospitalist at Cook Children’s, told ABC News. “And so, the biggest issue we’re kind of running into is running out of hospital beds and long wait times and our ERs and urgent care secondary to the volume of patients that are being affected by these viruses.”
According to Brewer, the ER is seeing about 500 patients a day, which is much higher than normal. This is leading to longer wait times and patients waiting longer to be admitted to the hospital.
Patients sicker than ever
Also different this season is the number of older children who have fallen ill with the virus. Brewer said in past seasons, she usually sees infants under 6 months old with RSV, but she is seeing more toddlers affected and those without a history of pulmonary problems or lung problems.
Brewer remembers one patient, a child around 2 or 3 years old who was born healthy and with no history of asthma or lung disease.
“[The child] started getting ill and did not want to drink as much, parents are noticing a little bit increased work of breathing and came into our ER because of it,” she said.
The child was diagnosed with RSV and needed to be placed on high-flow oxygen, which is different from standard oxygen by providing warmed and humidified gas, which allows oxygen to flow at higher rates.
“I’m not used to seeing kids that are older without a history of asthma and this poor child just working so hard to breathe and needing that extra support having to go the ICU, which is just so different than prior years,” Brewer said. “Normally, I’m able to give them a little bit of oxygen and the older kids are just able to pull through, and this year it’s just been hard because seeing kids like that working so hard to breathe.”
Burned out health care staff
This surge putting strain on hospital systems is also contributing to health care burnout.
Nurses who might normally be taking care of four or five patients at a time are suddenly taking care of several more patients.
“We plan for the normal volumes [of patients], even the high volume, but nothing like this,” Salazar said. “And so that puts a lot of strain on the health care personnel that are already tired coming out of COVID.”
Brewer explained health care workers are trying to balance taking care of sick children, tending to parents frustrated by long wait times and their personal lives.
“We are trying our best to kind of be there for every child that needs us,” she said. “But it has led to a lot of stress amongst physicians and nurses, respiratory therapists and everybody working in the hospitals, because we are seeing so many more than we normally do, are working longer hours, we’re kind of working with more sick kids than we normally see.”
Brewer continued, “This is the most patients I’ve ever seen in my career, which leads to a lot of stress. And you want to be there, you want to help. But you also need to realize you’ve got to take time for yourself.”
(NEW YORK) — Seven-year-old Jax Ramirez was born a “typical little boy,” according to his mom — but now, he’s one in 1.6 million.
Due to an extremely rare genetic disease, he dreams of the day he can attend school in person — and with a bone marrow transplant, he may have the chance.
“He’s a cyber student,” his mother, Missy Ramirez, said. “He just hops on [Zoom] every day with a smile. He’s loving. He loves his friends. His biggest wish is that he someday can see his friends in person.”
Jax was diagnosed with IPEX syndrome last year. The symptoms of the autoimmune disease include diarrhea, diabetes and eczema in young patients, according to the National Center for Advancing Translation Sciences.
The only potential treatment for the disease is a bone marrow transplant. More than a year after his diagnosis, Jax is still searching for his life-saving donor.
To help continue to raise awareness of the bone marrow registry, GMA is partnering with Be The Match in our “One Match, Second Chance” series to continue to raise awareness and to help save lives. Learn how to take the first step to sign up to become a donor today.
Missy Ramirez said symptoms became noticeable when her son was about 2 and a half years old, and he started to have fits of “rapid breathing.” Jax was diagnosed with Type 1 diabetes.
“Nobody in my family has Type 1 diabetes. This is not something that I would have ever put on my mom radar,” she said. “It just didn’t sit well with me.”
Missy Ramirez said other things began to “pop up” and that her son seemed to get gravely ill, too easily.
“We would always end up in the hospital,” she said. “It was never just a little tiny cold.”
She said the common hand, foot and mouth disease turned into a hospital stay for Jax. Then, a runny nose from the flu precipitously turned into a weeklong medically induced coma.
“I had been researching people, doctors, specialists to help me find what the answer was because I knew it just couldn’t be bad luck anymore,” Missy Ramirez said.
Jax was eventually diagnosed with IPEX syndrome in October 2021. Missy Ramirez said they quickly discovered that there were no matches for her son on the bone marrow registry.
“The more diverse you are, the worse the outcomes are simply because there’s not enough representation of people of color on the registry,” she said.
“It was that moment I decided that I can’t just sit by idly hoping that somebody will just magically join this registry and save my son,” she added.
Missy Ramirez and a few close friends started The Match for Jax, a foundation to find a match for her son and others like him. Nearly a year later, the group has registered more than 4,000 people in her son’s honor, but they’re still looking for Jax’s match.
“Every family should have a match. Every person of color should have a voice,” she said. “Every person should be represented and every person should have a second chance at life.”
