Will Smith, Chris Rock confrontation at Oscars puts spotlight on alopecia, an autoimmune condition that affects millions

Will Smith, Chris Rock confrontation at Oscars puts spotlight on alopecia, an autoimmune condition that affects millions
Will Smith, Chris Rock confrontation at Oscars puts spotlight on alopecia, an autoimmune condition that affects millions
ANGELA WEISS/AFP via Getty Images

(NEW YORK) — The confrontation between Will Smith and Chris Rock that rocked the 2022 Oscars Sunday night is also putting a spotlight on alopecia, the autoimmune condition that affects Smith’s wife, Jada Pinkett Smith, and millions of other people.

Pinkett Smith, 50, first announced her experience with alopecia, or hair loss, in 2018, and has been public about her condition ever since.

Rock, while presenting the award for best documentary, joked about Pinkett Smith starring in a sequel to G.I. Jane, a 1997 movie starring Demi Moore, who shaved her head for the role, as the first woman to enter Navy SEAL training. Rock presumably made the joke because of Pinkett Smith’s shaved head.

After the comment, Smith walked onto the stage and slapped Rock, before yelling at him twice, “Keep my wife’s name out your f—— mouth.”

The confrontation shocked the Oscars audience, and in its aftermath, led to conversations on the ramifications of joking at the expense of someone’s appearance and a medical condition.

On Twitter, people with alopecia themselves or who have loved ones with the condition described watching the Oscars controversy unfold.

“I’ve had Alopecia since 2013. It can hit suddenly. One day, I was showering, & when I looked at my hands, most of my hair had come off,” one commenter wrote. “I’m lucky that bald men (I shave my head due to there being odd patches here and there) are accepted. Women don’t get that luxury.”

“As a mom of a 9yo with alopecia, those cackles after Rock’s barb brings up all kinds of rage,” wrote another commenter.

“He shouldn’t have hit him. He shouldn’t have made the joke. #Alopecia is horrendous, believe me, we lived it,” wrote another commenter, adding, “Laughing at hair loss is wrong and unkind.”

Pinkett Smith has said that her hair loss left her “shaking with fear,” describing the topic as “not easy to talk about.”

“It was terrifying when it first started. I was in the shower one day and then just handfuls of hair in my hands and I was just like, ‘Oh my God, am I going bald?'” she said in a 2018 episode of her “Red Table Talk” series. “It was one of those times in my life where I was literally shaking with fear. That’s a really scary experience. That’s why I cut my hair, and why I continue to cut it.”

She continued, “And my hair has been a part of me. Taking care of my hair has been a beautiful ritual. Having the choice to have hair or not, and then one day being like, ‘Oh my God. I might not have that choice.'”

More recently, in December, Pinkett Smith shared a clip on Instagram revealing a bare strip of hair loss on her closely shaved head.

“Now at this point, I can only laugh,” Pinkett Smith said as she displayed the top of her head. “Y’all know I’ve been struggling with alopecia, and just all of a sudden one day, look at this line right here.”

She continued, “But you know mama’s going to put some rhinestones in there. And I’m just going to make me a little crown. That’s what mama’s going to do.”

What to know about alopecia

Although experts don’t fully understand alopecia, they believe it occurs when a person’s immune system inappropriately targets their own hair follicles, which stifles hair growth, according to the National Institutes of Health (NIH).

Experts believe an undefined combination of environmental and genetic factors can trigger the disease.

Alopecia universalis, a complete loss of all body, face and scalp hair, is considered to be the most extreme and rarest form of the condition, according to the NIH.

Alopecia totalis, which is characterized by the loss of only hair on the scalp, is a less advanced form of the condition.

The most common form is alopecia areata, which causes small circular and patchy bald spots to develop, usually on the scalp and face, according to the NIH.

Alopecia areata affects nearly 2% of the general population at some point in their lifetime, or as many as nearly seven million people in the United States, according to the National Alopecia Areata Foundation, a California-based nonprofit organization.

The condition affects men and women equally and affects all racial and ethnic groups, according to the NIH.

Most people who get alopecia areata see it occur during their teens, 20s or 30s, but it can occur at any age, according to the NIH.

There is no cure for alopecia, but there are treatments, including steroid injections and, in more advanced forms of the disease, oral steroids or various immunotherapies.

More than a cosmetic issue, alopecia can take an emotional and psychological toll on patients, and the unpredictability of the hair loss can also be frustrating.

“Even though reactions to the disease are different for everyone, there are some common emotions that many people who have alopecia areata and the people around them say that they experience,” the National Alopecia Areata Foundation writes on its website. “These include feelings of grief, anxiety, loss, fear, embarrassment, loneliness and anger.”

Copyright © 2022, ABC Audio. All rights reserved.

For red and blue America, a glaring divide in COVID-19 death rates persists two years later

For red and blue America, a glaring divide in COVID-19 death rates persists two years later
For red and blue America, a glaring divide in COVID-19 death rates persists two years later
JOHANNES EISELE/AFP via Getty Images

(NEW YORK) — Political polarization in the U.S. was evident and intensifying long before the onset of the COVID-19 pandemic, two years ago.

Americans were already deeply divided about a multitude of issues, with differing opinions concerning healthcare, immigration, voting rights, gun reform and climate change, often leaving little room for collaboration across the aisle.

Polling shows that the emergence of the novel coronavirus in 2020 exacerbated the rift, pushing Americans further apart on key pandemic response efforts.

Surveys from Pew Research Center, last year, found that in the early months of the pandemic, about 6 in 10 Democrats and Democratic-leaning independents believed the virus was a major threat to the health of the U.S. population, compared to only a third of Republicans and GOP-leaning independents. That 26-point gap would ultimately grow to approximately 40 points by the fall, researchers found.

Over the last two years, few issues have been more divisive than the pandemic and related policies — from the raging debate over mask use, to the ongoing push to get Americans vaccinated.

Among all factors in the prevention of severe COVID-19 and death, vaccination has been key, experts say.

Unvaccinated Americans are several times more likely to be hospitalized and die and those living in rural areas, as well as conservatives and Republicans, were among the most hesitant to be vaccinated, according to a September 2021 ABC News/Washington Post poll. For unvaccinated Americans, the decision to not wear a mask or follow other restrictions, ultimately caused increased transmission, which in turn, resulted in more severe outcomes, experts suggest.

The end result is a gulf in COVID-19 death rates between red and blue states, one that is particularly amplified when examining the most and least vaccinated states.

“In the United States, COVID-19 has become a political issue, and people’s political beliefs strongly influence their behavior,” David Dowdy, an infectious disease epidemiologist at Johns Hopkins Bloomberg School of Public Health, told ABC News. “Political divides in our thinking about COVID are much stronger than in many other countries.”

Though politicization of the virus likely played a significant role in the differing death rates, due to varying approaches to restrictions and vaccination efforts, experts say, a myriad of other issues also contributed, including access to adequate healthcare, and the disproportionate impact of the virus on communities of color.

Vaccination rates and receptivity to mitigation measures have also been influenced by factors including misinformation.

Cumulative death rates in red states 30% higher

It has been nearly a year since the COVID-19 vaccines became available to every American adult last April, after initially being offered to health workers and older populations, when supplies were still limited.

However, vaccination rates differ markedly between states that voted for former President Donald Trump, compared to those that voted for President Joe Biden, paralleling the partisan lines that have divided the country.

Data sourced from the Centers for Disease Control and Prevention shows that the 10 states with the highest vaccination rates all voted for Biden in 2020, while nine of the 10 states with the lowest vaccination rates voted for Trump. The lone exception was Georgia, which narrowly went for Biden by less than a quarter of a percentage point.

Further, cumulative death data from the C.D.C., from over the last 10 months, illustrates the implications of political polarization of the COVID-19 vaccines.

An ABC News analysis of federal data found that on average, the death rates in states that voted for Trump were more than 38% higher than in states that voted for Biden, post widespread vaccine availability.

In addition, in the 10 states with the lowest percentage of full vaccinations, death rates were almost twice as high as that of states with the highest vaccination rates, the analysis found.

Over the span of the last 10 months, in the 10 states with the lowest vaccination rates, where between 50 and 54.5% of the total population had been fully vaccinated, there was an average of 153 COVID-19-related deaths per 100,000 residents.

In contrast, during the same time period, the 10 states and jurisdictions with the highest vaccination rates, which all voted for Biden, there was an average of about 82.2 related deaths per 100,000 residents. In all 10 states, about 75% of residents had been fully vaccinated.

Vaccination and mitigation ‘have become heavily partisan’

“There are a few reasons why we’re seeing such differences in death and vaccination rates. The obvious one is that both vaccinations and other forms of COVID-19 mitigation have become heavily partisan,” Seth Masket, a professor of political science and director of the Center on American Politics at the University of Denver, told ABC News.

According to experts, political polarization has led to different responses and attitudes with respect to the pandemic.

While in the early months of the pandemic, many Democratic governors strongly promoted stay-at-home orders, masking initiatives and other mitigation measures, Trump, and some Republican governors, sought to deemphasize the seriousness of the threat of the virus, prioritizing instead the economy and the value of independence, Dowdy argued.

“It’s going to disappear. One day — it’s like a miracle — it will disappear,” Trump said in late February 2020. “The coronavirus is very much under control in the USA.”

Trump later admitted to veteran journalist Bob Woodward that he had indeed tried to downplay the severity of the virus because he did not want to create panic.

“From early in the pandemic, following the rhetoric of then-President Trump, Republicans have consistently not been as concerned about the dangers of COVID-19, and they have been more skeptical of medical advice about preventing its spread,” ​​Masket said. “Democratic leaders have consistently expressed more concern about the disease and Democratic voters have largely followed suit.”

Last fall, an ABC News/Washington Post poll found that the increase in infections caused by the delta variant surge resulted in a jump in perceived risk of catching the virus, from 29% in late June to 47% in September. However, only 39% expressed worries about the consequences of infection.

Political partisanship influenced pandemic-related health decisions, beliefs and behavior, including “one’s attitude towards public health measures — like masking — became a signifier of political and cultural identity,” Adrian Bardon, a professor of philosophy at Wake Forest University explained.

While most states imposed restrictions on gatherings and businesses, issuing stay-at-home orders and masking mandates, in an effort to curb the spread of infections, a number of states moved to ease restrictions and masking requirements soon after the first wave abated in 2020.

Eleven states — all of which are led by Republican governors — never issued a statewide masking mandate.

These restrictions, along with the masks and vaccine mandates, had made a significant difference in protecting people from infections, Peter Jacobson, professor emeritus of health law and policy at the University of Michigan School of Public Health, told ABC News.

“In easing these restrictions earlier, more people were going to be exposed,” Jacobson said. “The blue states took this entire outbreak more seriously… You can’t underestimate the messages that were being sent to the public.”

Tens of millions of Americans remain unvaccinated

A November 2021 study published in the National Institute of Medicine’s National Library of Medicine, found that “politicization has undoubtedly contributed to hesitancy toward uptake of the COVID-19 vaccine.”

The red and blue gap in COVID-19 vaccination totals was preceded and predicted by a red and blue gap in belief in the seriousness of the incipient pandemic, Bardon said.

Since the introduction of the vaccine drive, over 250 million Americans have received a shot — representing about 76.8% of the total population, according to federal data. However, despite concerted efforts to convince those most hesitant, 57 million eligible Americans over the age of five remain completely unvaccinated.

Despite the fact that the former President Trump created Operation Warp Speed, which developed COVID-19 vaccines at a record pace, and endorsed the use of the vaccine, alongside Republican allies like Florida Gov. Ron DeSantis, a large swath of Americans have still refused the shots.

“The irony of course, is that the Trump administration was responsible for fighting for this pandemic funding, in fast-tracking the vaccine process that has really saved a lot of lives,” Jacobson said.

However, while Trump and some of his allies have encouraged vaccination, many still decried mandates.

According to polling from KFF, as of February 2022, just 56% of Republicans are vaccinated, as compared to 70% of Independents, and 92% of Democrats. In addition, a third of Republicans reported that they definitely would not get vaccinated.

Experts have stressed repeatedly that the global and domestic vaccination drive ultimately saved the lives of millions of people.

In the absence of a vaccination program, an analysis from the Commonwealth Fund found that there would have been approximately 1.1 million additional COVID-19 deaths and more than 10.3 million additional COVID-19 hospitalizations in the U.S. by November 2021.

Federal data also shows that in January, unvaccinated adults were nine times more likely to die of COVID-19, compared to vaccinated individuals, and six times more likely to require hospitalization.

Additionally, unvaccinated adults were about 21 times more likely to die of COVID-19 in January, and 12 times more likely to require hospitalization, compared to fully vaccinated and boosted adults.

Access and disparities also a persistent issue

Experts stress the importance of other factors at play, besides politics, to also explain the higher COVID-19 death toll in red states as compared to blue states.

“Democrats and Republicans tend to live in different kinds of areas. Republicans are more likely to live in more sparsely populated areas, where diseases may not spread as easily, but health facilities also tend to be farther away,” Masket said.

Lack of access to transportation, proper to pharmacies, all have major consequences for public health, Jacobson added.

“All relevant problems begin with access: access to treatment, access to pharmaceuticals. These issues were exacerbated in the pandemic,” Jacobson said. “People in some communities don’t even have transportation to [healthcare] facilities.”

According to ABC News’ analysis last summer of pharmacy locations across the country, there are 150 counties where there is no pharmacy, and nearly 4.8 million people live in a county where there’s only one pharmacy for every 10,000 residents or more.

Based on Census data, there are far fewer pharmacies per person — especially chain pharmacies — in rural parts of the country compared to urban areas.

In addition, the inequities, with respect to access, underscore the racial gap prevalent throughout the country, in both rural and urban areas, with more pharmacies in whiter and wealthier neighborhoods per person than in poorer, predominantly nonwhite neighborhoods.

Persisting disparities throughout the pandemic have also resulted in a higher likelihood of death from COVID-19 for Black and brown Americans.

According to federal data, adjusted for age and population, the likelihood of death because of COVID-19, for Black, Asian, Latino and Native American people is about one to two times higher, compared to White Americans.

Although some minority communities initially lagged behind in the nation’s vaccination efforts, the rates of Black and Brown Americans have significantly caught up proportionally to their respective populations.

However, Black and brown Americans are still behind in the national booster drive, with only 40.3% of eligible Hispanic/Latino Americans boosted, and 43.6% of eligible Black Americans boosted.

Comparatively, about 54.4% of White Americans have received their booster, while Asian Americans lead every race/ethnicity group, with 60% of the eligible population boosted.

Misinformation and distrust of science and government exacerbated by the pandemic

The pandemic has exacerbated an already deteriorating public trust in the scientific community, experts say.

“Science has unfortunately, always been politicized in the United States,” Dowdy said. “Many view scientists as being alarmist rather than rational. When scientists in the U.S. push for things like COVID-19 vaccination, this has also become a political — rather than objective — statement.”

In addition, confusion over inconsistent and shifting messages from the federal government further eroded trust in the management of the pandemic by health agencies, intensifying the divide.

“It’s concerning that the pandemic seemed to deepen the pre-existing gaps in confidence between Republicans and Democrats in our national health agencies,” said Thomas Wood, assistant professor of political science at The Ohio State University.

The C.D.C. has repeatedly defended itself against accusations of flip-flopping, as they updated their public health guidelines, throughout the pandemic.

The reality has been that the science behind COVID-19 is not black and white, but more often, gray, C.D.C. Director Dr. Rochelle Walensky told CBS News’ “60 Minutes,” earlier this month.

“Since my getting here what I said is, ‘we’re gonna lead with the science.’ The implication was that science was black and white, and in fact, in an ever-evolving virus, and a two-year-long pandemic, the science isn’t always black and white. It’s — it’s oftentimes shades of gray,” Walensky said.

Further, the barrage of misinformation, particularly in the first few months of the pandemic, and of denialism, added Jacobson, played a big role in abetting this lack of trust in science, as well as in government, in public institutions, and ultimately costs lives.

“A clear problem was people’s unwillingness to take precautions — the feeling that COVID-19 doesn’t exist,” Jacobson said.

A key question for officials to address will be how to repair the damage that has been done to public health, to the sciences, given the politicization of the pandemic, Jacobson explained.

The long-term implications for public health are, if not dire, certainly troublesome, he added.

“We are not going to be prepared for [the next pandemic], because the public isn’t prepared,” Jacobson concluded.

Copyright © 2022, ABC Audio. All rights reserved.

Officials expected to offer second booster shot for those over 50 years old

Officials expected to offer second booster shot for those over 50 years old
Officials expected to offer second booster shot for those over 50 years old
Morsa Images/Getty Images

(WASHINGTON) — As soon as Tuesday, the U.S. Food and Drug Administration could authorize COVID-19 booster shots for Americans over 50 years old, two officials familiar with the matter told ABC News, though the fourth shots are likely to be only offered and not formally recommended.

The officials stressed that the details are still under discussion and could change in the next few days.

After FDA’s expected authorization early this week, the Centers for Disease Control and Prevention will give guidance on how to implement it in pharmacies and doctors offices around the country, as the process has gone throughout the pandemic.

The language from CDC Director Rochelle Walensky is expected to be that people over 50 may get a second booster shot, rather than should get a second booster shot, officials said.

In other words, the shots would be available for people to make individual decisions based on their health, risk tolerance and age. In the past, the CDC has used similar language to open up booster shots first to the most vulnerable and then to the general population.

FDA’s panel of experts will convene on April 6 to discuss the broader population and what population will need booster shots next, as well as the need for a variant-specific booster.

Officials weighing the decision are also considering that anyone who gets a booster this spring would likely get boosted again when they are recommended for the broader public later this year, potentially in the fall, according to another person familiar with the matter.

Pfizer and Moderna asked the FDA last week to authorize another booster dose — especially for elderly Americans, a group that tends to have weaker immune protection.

Pfizer asked the FDA to authorize fourth doses for people older than 65, while Moderna asked for authorization for everyone 18 and older.

ABC News’ Sony Salzman contributed to this report.

Copyright © 2022, ABC Audio. All rights reserved.

Baby born at 25 weeks goes home after 460 days in NICU

Baby born at 25 weeks goes home after 460 days in NICU
Baby born at 25 weeks goes home after 460 days in NICU
Courtesy of Sparkle Jurnakins

(INDIANAPOLIS) — For the first time in his life, 15-month-old Kendall Jurnakins is home.

The baby boy spent the first year of his life in the neonatal intensive care unit at Ascension St. Vincent Women’s Hospital in Indianapolis before being cleared for discharge on March 16.

Hospital staff gave the boy a joyous send-off, lining up for a cheer parade and applauding Kendall as he made his way home with his parents, Sparkle and Keith Jurnakins.

It was a long time coming for the boy and his mother, who were both so sick at one point that doctors worried they both might not make it.

Sparkle Jurnakins, 41, a mom of three, had to get an emergency cesarean section due to high blood pressure complicated by the fact that she also has diabetes and only one kidney.

So, on Dec. 11, 2020, Kendall Jurnakins was born at 25 weeks. He weighed just 15 ounces. His doctor estimated his chance of surviving at the time was close to 50-50.

“When he was born at 25 weeks and based on his weight, national data and international [data], his chance to survive was around like 50 to 60% … this is only survival, not survival with complication or long-term problems, but he actually beat some odds,” neonatologist Dr. Taha Ben Saad, who cared for Kendall, explained to Good Morning America.

Jurnakins told GMA she feared for her baby’s life at the time. “I just was scared my baby wasn’t gonna make it because they said at that small, he probably wasn’t gonna make it,” she recalled.

At 25 weeks, Kendall had various complications from his prematurity. He had respiratory distress syndrome and chronic lung disease and later had problems eating, too.

“I was going to visit him every day. He was really sick in the beginning,” Jurnakins said. “We couldn’t figure out why he couldn’t get his lungs together. So we had to, they told me that his lungs wasn’t really fully developed like they should. They was gonna have to trach it. So we ended up having to have that big surgery, a trach put in for him to be healthy.”

Kendall received a tracheostomy and was placed on a ventilator to help him breathe. He later had to get a gastrostomy tube as well for feeding.

Eight months into Kendall’s treatment, a major complication occurred — Jurnakins contracted COVID-19 and checked herself into the same hospital.

“I remember going into the hospital saying I couldn’t breathe. That was the only thing I remember,” Jurnakins recalled.

Like her son, Jurnakins had to be placed on a ventilator and get a tracheostomy. She spent two months in the intensive care unit.

“COVID almost took me out. … From August to October, I was in a coma. And then in the hospital till almost December,” Jurnakins said.

“It was very emotional when his mom got sick in the hospital,” Ben Saad said. “We thought she’s not gonna survive and then all his nurses were really worried.”

Along with her doctors and nurses, Jurnakins also credits her husband for her own survival. “Him being by my side through everything, I mean, it was so scary. Everything was scary,” she said. “From me almost dying, to my son going through what he was going through, where they were just like, ‘Oh, he’s not gaining weight. He’s not doing this.’ It was just all these ups and downs, where we were just very worried that Kendall wasn’t gonna come out of the hospital as a regular child.”

Against the odds, Jurnakins recovered and she was able to reunite with her baby boy in early December 2021.

“I thought he was not gonna remember me because he was so tiny when I went in the hospital,” Jurnakins said. “Soon as I got there, he just laid on me and looked at me the whole time. It was the best feeling in the world.”

Throughout his 460-day stay in the NICU, Kendall reached a lot of firsts — everything from his very first tooth to learning how to sit and crawl.

Today, Jurnakins said her youngest son is “a bundle of fun” and has a delightful and strong personality. “He’s Mr. Personality. If you ever meet him, you will always remember him. He’s funny, he likes attention,” she said.

When he was discharged, Jurnakins said it “was the best day of my life.”

“I couldn’t believe it. I was just like, ‘Oh, my baby really made it. Oh, we’re coming home. Oh, Lord. Thank you,” she said. “I prayed. I cried. I was happy. I was sad. I was everything but I was ready for my baby to come home.”

As she reflected on their extraordinary journey over the last 15 months, Jurnakins said she had a message for her little boy.

“I want to say, his mother fought for him like he’s a fighter,” she said. “He was a fighter forever and I fought for him.”

Copyright © 2022, ABC Audio. All rights reserved.

Mom pens powerful message to thank surrogate for rainbow baby

Mom pens powerful message to thank surrogate for rainbow baby
Mom pens powerful message to thank surrogate for rainbow baby
Courtesy of Kelly Savant

(NEW YORK) — Two years ago, two women — complete strangers — embarked on a remarkable journey together and today, they say they’ve become “family.” Now, they’re opening up about their story in the hopes of helping others.

Kelly Taylor Savant, 41, of Baton Rouge, Louisiana, had been trying to conceive for six years. She and her husband, Kyle Savant, found out they were expecting twins in 2014 but then Savant had a miscarriage and underwent a dilation and curettage (D&C) procedure.

Savant says the procedure later led her to develop Asherman’s syndrome, which according to the Cleveland Clinic, is a rare condition where scar tissue builds up in the uterus, which can lead to infertility. Within the six-year period, she had another miscarriage, tried in vitro fertilization, intrauterine insemination and had other surgeries, all in the hopes of possibly growing her family.

After consulting with multiple doctors and considering her options, Savant started exploring surrogacy. “When I realized I needed a carrier, I didn’t know where to start, I didn’t know what to do, I didn’t know anybody who had ever had one,” she recalled in an interview with GMA.

Then she came across a Facebook post by Jasmine Johnson Isaac, a nurse and a mom of four from Denham Springs, Louisiana.

Finding each other on Facebook

Isaac had been thinking about becoming a surrogate for a while, but didn’t know where to begin. She decided to post online and hoped that someone interested would reach out. “As a young woman, I’ve always wanted to be a surrogate,” Isaac told GMA. “I have kids of my own, and the love that I have for my kids, I just feel like other women deserve the same thing.”

The two connected and began talking online, later realizing they only lived about 15 minutes away from each other. In August 2020, they took a leap of faith and met in person for the first time.

“When we met up, she had already gotten clearance from her OB-GYN to carry, which is the first step,” Savant said. “Then we went to dinner — me, my husband, her and her husband — and I just knew someone who was going to bring their husband to dinner to meet us was probably someone who was going to follow through with their words.”

The dinner was a success and the Isaacs and the Savants agreed to team up. Savant and Isaac secured lawyers, Kristen Stanley-Wallace and Julie Udoessien, who walked them through the legal process in Louisiana, and searched for medical professionals to help them realize a shared dream.

Hanging onto hope

They started the medical clearance process in September 2020 and by April 2021, they began the embryo transfer. Then, they hit a major setback — Jasmine didn’t get pregnant.

“I at that point, honestly felt like I couldn’t do it anymore. I had tried for now going on seven years because I was still trying every month myself, like why not?” Savant said. “She actually is the one, when I called her, she said, ‘We’re doing this again.’ … And she is one of the only reasons, the most influential reason that I did a second transfer.”

For the second transfer, Savant and Isaac switched doctors, seeking the care of Dr. Warren Jay Huber of The Fertility Institute of New Orleans.

By the summer of 2021, Isaac found out she was pregnant. “When I got a solid positive, I went to the store and I purchased a teddy bear and I got a little box,” she recalled. “I put a picture of the pregnancy test inside of the box and it was pretty much telling her that it’s a good chance that they have a baby on the way.”

Isaac delivered the surprise present to Savant’s workplace and left it with a secretary while Savant was away. “She was just so excited once she found that box and just to hear her on the phone and just to hear the excitement in her voice, it was everything for me,” Isaac said.

Along with Savant, Isaac credits her mother, husband of nine years, Maurice Isaac II, and one of her close co-workers for helping her through the surrogacy journey, one she was determined to see to the end. “In the past, I’ve had a miscarriage and just the feeling like my body isn’t doing something that it was supposed to do, it took a toll on me. So of course, if I can help another woman get past that … if they have that want and desire to have a child and I can help, I want to do that,” she said.

“It’s something that my whole heart is in,” Isaac said. “The love that I have for my kids – who doesn’t deserve to experience the same joy that I have, the joys of motherhood?”

A dream realized

Isaac explained that due to blood pressure concerns, doctors decided it was best for her and the baby to be induced. On Valentine’s Day of this year, baby Ainsley Rain Savant arrived.

A nurse working with Dr. Kristin Chapman at Woman’s Hospital in Baton Rouge, Louisiana, helped capture the special moment, taking photos during labor and delivery. Savant shared them along with a heartfelt message on Facebook, writing in part, “There just aren’t enough thank you’s in the entire world. Jasmine has single handedly changed me and Kyle’s lives forever for the better and I thank God for her every day. She lives life with no fear, no regrets and a desire to make others happy! She’s simply the best.”

Savant says the big day felt surreal. “I was in shock when I saw the baby. I was immediately in love. I gave Jasmine a huge hug after and my husband did too and we have pictures of it all. I mean, it was the best moment of my entire life and Jasmine always says, ‘Kelly you don’t realize what you’re doing for me.'”

“It’s something that she’s been waiting for a very long time,” Isaac added. “So it was just so self-fulfilling for me to just do that for her. And just to see the expression on her face was enough.”

As for baby Ainsley’s name, Savant said, “We wanted to use the name Rain as a middle name just to signify the rainbow after the storm. … It’s the blessing after all of the devastation.”

A rainbow baby is a term often used for a baby born after a mother suffers a miscarriage, stillbirth or loss of an infant.

After their extraordinary journey, Isaac and Savant say they now consider each other family. “Not a day goes by since August of 2020 that we have not spoken,” Savant said, adding that she considers Isaac “the best person I have ever met.”

Sharing hope

Isaac and Savant say they’ve had to navigate several regulations and laws in Louisiana, which only allows for gestational carriers if certain conditions are met.

“In Louisiana, a lot of people don’t know how really strict it is,” Isaac said. “My husband actually had to be involved with it and he’s been supportive this entire time. He actually had to do lab work and testing and of course, he had to be on board with me doing it as well. I couldn’t do it without him, without him agreeing that it’s OK.”

“Jasmine and I’s hope is that this brings awareness and Louisiana can start looking at their outdated laws and maybe make some changes,” Savant said.

For others interested in becoming a surrogate, Isaac says you should be sure of your decision and recommends setting up a solid support system. “If you’re interested in becoming a surrogate, of course do not offer unless you know you’re fully on board with doing so. You don’t want to get anyone excited that you’re going to do something and then step back on it. You kind of set them back a little bit doing so.”

Savant also hopes their story offers hope to others struggling with infertility. “I think women almost feel like there’s no hope for them like, they just want to give up because it’s too hard. So I would want them to know go see your fertility doctor. Join a few surrogacy Facebook groups, research the laws in your state. Go speak to an attorney.”

“This can be done,” she added. “You just need to be persistent, stick with it, and not give up your dream. Giving up can’t be an option if you really want this.”

Copyright © 2022, ABC Audio. All rights reserved.

Endometriosis Awareness Month: Woman describes seven-year battle to get endometriosis diagnosis

Endometriosis Awareness Month: Woman describes seven-year battle to get endometriosis diagnosis
Endometriosis Awareness Month: Woman describes seven-year battle to get endometriosis diagnosis
Taylor Keefe

(NEW YORK) — March marks World Endometriosis Awareness Month dedicated to recognizing and advocating for the estimated 190 million women worldwide who suffer from endometriosis.

Taylor Keefe was 13 years old when she first saw a gynecologist.

“Every time I was on my period, I had no functionality. I would be bent over in pain for days at a time, screaming and crying,” said Keefe, now a 26-year-old clinical mental health counselor in New Jersey. “After two years of missing school and not being myself, my parents were concerned so I went to a gynecologist.”

It wasn’t until seven years later — after many more doctor visits, pain medications and various hormonal treatments — that Keefe was diagnosed with endometriosis, a disease where the tissue forming the inner lining of the uterus is found outside of the uterus such as within the fallopian tubes, ovaries, bladder and intestines.

Lesions from endometriosis can cycle monthly with the hormonal environment of the menstrual cycle and cause severe pain, infertility, and other associated symptoms in any of the affected organs such as painful urination, bowel movements, nausea, vomiting or bloating.

Following surgery at age 21, she was found to have more than 20 endometriosis implants in various organs. Keefe recalls the first thing her surgeon told her parents was, “She’s not crazy.”

“The disease itself and dealing with it has been invalidating for years because doctors invalidate it, friends and family invalidate it,” said Keefe, who said she felt validated for the first time with her diagnosis.

Endometriosis affects 1 in 10 women of reproductive age in the United States, according to the American College of Obstetricians and Gynecologists (ACOG). However, many women go undiagnosed for years due to such a broad range of symptoms and limited awareness of the disease, experts say.

“There is a lack of awareness. Women are usually treated for everything other than endometriosis when they present,” Dr. Tamer Seckin, an endometriosis surgeon in New York and co-founder of The Endometriosis Foundation of America, a nonprofit organization focused on increasing endometriosis awareness and research, told “Good Morning America.” “They get the runaround and get diverted to other specialties whether for bladder symptoms or IBS.”

Endometriosis often begins as small, scattered lesions on the inner lining of the abdominal cavity, known as “peritoneal endometriosis,” according to Seckin. These lesions can be very small in increments of millimeters and not show up on imaging tests such as ultrasounds.

“When [physician] don’t find anything, it’s easy to think the pain is in patient’s head and that’s really the crux of the problem,” Seckin said.

Endometriosis is most commonly diagnosed in women in their 30s and 40s, according to ACOG, however, it can affect adolescents as well.

Celebrities like Lena Dunham and Amy Schumer have previously publicly shared their own journeys with endometriosis and eventual hysterectomy, spotlighting the ultimate treatment for the disease for many women.

“Because I had to work so hard to have my pain acknowledged, there was no time to feel fear or grief to say goodbye,” Dunham wrote about getting a hysterectomy at age 31 in a 2018 article for Vogue. “I made a choice that never was a choice for me, yet mourning feels like a luxury I don’t have.”

Removal of the uterus, tubes and ovaries is considered the most definitive and “last resort” treatment for endometriosis, according to ACOG.

Because one can no longer bear children after a hysterectomy, it is often a difficult decision for women who have endometriosis. Removal of the ovaries also means surgically-induced menopause and this carries other health implications and consequences from low estrogen.

Therefore, many women choose to manage their symptoms with medications or fertility-sparing surgeries, where endometriosis lesions are removed, but uterus and ovaries are left behind.

However, as many as 8 in 10 women have pain again within two years after fertility-sparing surgeries, according to ACOG, because all of the endometriosis tissue was not removed.

Hysterectomy is also not necessarily a cure for endometriosis, as the disease often may have spread beyond the reproductive organs. About 10% of women return with endometriosis symptoms and 4% need additional surgery following a hysterectomy with removal of ovaries, according to a study published in Fertility and Sterility.

Non-surgical management options for endometriosis include use of birth control pills and other hormonal medications used to ease periods and pain symptoms.

“I think it’s important to recognize management versus treatment,” said Seckin, adding that while birth control pills and hormonal medications may help manage symptoms, “They don’t treat the endometriosis. The lesions don’t clear. They stay there. Treatment is removing the tissue.”

Following her first surgery at age 21, Keefe underwent two more surgeries within five years for progressive disease. All of her surgeries have been excision surgeries where endometriosis lesions were removed, and her reproductive organs preserved.

She said while a hysterectomy may be in her future at some point, she hopes to experience motherhood first, saying, “Becoming a mom has been a dream my whole life.”

Keefe, who experienced a pregnancy loss last year, said she is aware of the effect endometriosis may have on her fertility. She froze her eggs at age 23, at the advice of her doctors, in case she needs them in the future to get pregnant.

“To get a positive pregnancy test was one of the happiest days of my life. I never thought I would see that,” said Keefe, adding that after her pregnancy loss, she fears pregnancy “might never be a possibility.” “This might be the pattern every single time as a result of the scar tissue and all the damage from endometriosis.”

An estimated 4 in 10 women with infertility have endometriosis, according to ACOG.

Inflammatory changes from endometriosis could block fallopian tubes or impair sperm or egg function, causing infertility.

The search for a better diagnosis

Diagnosis of endometriosis is currently made by laparoscopy, a procedure where a surgeon directly inspects the organs inside of the pelvis using a camera to look for endometriosis lesions and collects biopsy samples for diagnosis.

“Definitive diagnosis requires laparoscopic surgery which many women do not really want to undergo and I think that contributes to long delays in diagnosis,” said Dr. Christine Metz, professor at the Feinstein Institutes for Medical Research.

The need for laparoscopic confirmation of lesions for diagnosis of endometriosis is a topic of debate among experts due to the costs and inherent risks of surgery.

Researchers from the Feinstein Institutes for Medical Research, led by Metz and her colleague, Dr. Peter Gregersen, are working to develop a less invasive method to diagnose endometriosis through the use of menstrual blood samples.

According to the researchers, menstrual blood samples collected from patients with known endometriosis have distinct cellular profiles and inflammatory markers compared to samples from healthy women.

Metz said she hopes that, based on the current evidence, menstrual blood samples can be used as a screening tool prior to patients having to undergo laparoscopy for diagnosis.

“If you see that the patient has markers that are indicative of endometriosis, they would be recommended to go for the surgical definitive diagnosis,” she said.

Researchers hope this could help prevent delays in diagnosis by identifying and encouraging the subset of patients who may need laparoscopy.

While scientists continue to look for new ways to improve the diagnosis and management of endometriosis, there remain many unknowns and still no cure for endometriosis.

“There is a lack of funding, support and lack of research in this area considering that 10% of women have or experience endometriosis,” said Metz.

Seckin noted that the social stigma around periods and taboos surrounding women’s health issues contribute to the lack of awareness of endometriosis. He said he encourages his patients to speak up about their endometriosis to raise awareness.

Keefe said she has found empowerment in speaking about her endometriosis battle.

“It’s the most defeating of experiences in a lot of ways,” she said. “At the same time, we’re only going to be able to get through it if we lean on each other and we’re stronger together.”

Esra Demirel, M.D., an OB-GYN resident physician at Northwell Health, is a contributor to the ABC News Medical Unit.

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New York City to offer free doula access in bid to reduce maternal mortality

New York City to offer free doula access in bid to reduce maternal mortality
New York City to offer free doula access in bid to reduce maternal mortality
Oscar Wong/Getty Images

(NEW YORK) — As the United States continues to face the highest maternal mortality rate among developed nations, the country’s largest city is offering new support for expectant people.

New York City will begin offering free doula access to families, Mayor Eric Adams announced Wednesday.

The city will also train more doulas — trained professionals who provide support to moms before, during and after childbirth — as part of its Citywide Doula Initiative, with the goal to train 50 doulas and reach 500 families by the end of June.

The initiative will focus on reaching birthing families in 33 neighborhoods “with the greatest social needs,” according to the city’s announcement.

As part of the effort, the city will also expand its Midwifery Initiative to nearly 40 public and private birthing facilities across the city, and has charged the city’s Department of Health and Mental Hygiene with gathering data and developing a report on births and care with midwives.

“Today, we are announcing a multifaceted initiative to help reduce the inequities that have allowed children and mothers to die at the exact time when we should be welcoming a life,” Adams said in a statement. “By expanding and investing in both doulas and midwives, we are taking the steps necessary to begin to address the disparities in maternal deaths, life-threatening complications from childbirth, and infant mortality.”

New York City has a maternal mortality rate of 49.6 deaths per 100,000 live births, according to a report released last April by the Department of Health and Mental Hygiene.

Nationally, the U.S. has faced a growing maternal mortality crisis that only increased during the coronavirus pandemic, according to the Centers for Disease Control and Prevention (CDC).

It is a crisis that also disproportionately affects women of color.

In 2020, Black women died of maternal causes at nearly three times the rate of white women, up from around 2.5 times higher than in 2019, according to CDC data.

Black women also died in 2020 at higher rates than Hispanic women, who had a rate of 18.2 deaths per 100,000 births in 2020 — a more than 40% increase from the previous year.

Pregnancy-related deaths are defined as the death of a woman during pregnancy or within a year of the end of pregnancy from pregnancy complications, a chain of events initiated by pregnancy or the aggravation of an unrelated condition by the physiological effects of pregnancy, according to the CDC.

Because of the maternal mortality rate and its impact on women of color, a growing number of Black women see having a doula, particularly a Black doula, as a potentially lifesaving advocate during birth.

Dr. Jacquelyn McMillian-Bohler, a certified nurse-midwife and assistant professor in Duke University’s school of nursing, describes doulas as bridging the communication gap between health care providers and Black female patients.

“Our health literacy is poor across the board, and then when you add racism on top of that, it just creates another layer,” she told ABC News last year. “That’s what we’re doing with the doula, we’re trying to attack that health literacy piece that really affects outcomes.”

Dr. Ashanda Saint Jean, a board-certified OBGYN and chair of OBGYN for the Health Alliance Hospitals and Westchester Center Medical Health Network in New York, explained that doulas are a source of non-medical support for pregnant women before, during and after childbirth.

“A doula is a support person who has been trained and educated in labor and delivery,” Saint Jean said last year. “I’ve had a number of Black patients feel that having a doula is an extra layer of support where they’re able to more ask questions about their birthing experience and explore all measures to ensure a healthy outcome.”

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New York City vaccine mandate rollback prompts concerns of double standard

New York City vaccine mandate rollback prompts concerns of double standard
New York City vaccine mandate rollback prompts concerns of double standard
Tayfun Coskun/Anadolu Agency via Getty Images, FILE

(NEW YORK) — Big Apple athletes and performers who haven’t received their COVID-19 vaccine shots now won’t be barred from taking the court or stage. But some New Yorkers who are still required to show proof of vaccination are calling foul on what they see as a double standard.

New York City Mayor Eric Adams announced Thursday that he was dropping the mandate that all city-based athletes and performers show proof of vaccination to take part in their game or event. Adams said his decision was based on the city’s low COVID-19 cases and hospitalizations and the city’s goal to restart its economy.

“We have to be on the field in order to win,” Adams said during a news conference at Citi Field, where unvaccinated Mets players will no longer have to worry about not playing when the baseball season begins next month.

Until Thursday’s announcement, unvaccinated athletes could not play home games, because venues required everyone to be vaccinated for entry. Visiting players and entertainers, however, were exempt.

This affected the Brooklyn Nets after its star point guard, Kyrie Irving, repeatedly refused to get vaccinated.

Irving was listed inactive during the first three months of the season but was called up in January for road games. He scored 43 points in his last game Wednesday against the Memphis Grizzlies.

Adams said the old rules put teams and performers at a disadvantage.

“This is about putting New York City performers on a level playing field,” Adams said.

Broadway performers represented by Actors Equity previously agreed to mandatory vaccinations.

“Broadway theatres anticipate no change in our protocols based on this announcement. We continue to evaluate our COVID safety protocols for audiences, cast and crew, in concert with our unions and medical experts,” Charlotte St. Martin, the president of The Broadway League, said.

The mayor added that the decision will help the venues and employees who work in the arenas and entertainment venues and local businesses.

But not everyone was thrilled with the mayor’s decision, particularly some unions representing city workers who are required to show proof of vaccination to work.

“There can’t be one system for the elite and another for the essential workers of our city. We stand ready to work out the details with the mayor, as we have been throughout this process,” Harry Nespoli, president of the Uniformed Sanitationmen’s Association, said.

City Council Speaker Adrienne E. Adams also expressed concerns about the “ambiguous messages” sent to New Yorkers about vaccine requirements.

“This exemption sends the wrong message that higher-paid workers and celebrities are being valued as more important than our devoted civil servants, which I reject. This is a step away from following sensible public health-driven policies that prioritize equity,” she said in a statement.

Earlier in the month, the mayor dropped the requirement for indoor businesses and venues, including movie theaters, to have their customers show proof of vaccination and wear a mask. He also dropped the mask mandate for schools and is set to drop the mask mandate for children 2- to 4-years old.

As of Thursday, 77.5% of all New Yorkers were fully vaccinated, and 36.3% of residents had received their booster dose, according to the city’s Health Department.

The mayor and health department have repeatedly stressed that the COVID-19 vaccines are the most effective way of preventing hospitalizations and death caused by the virus and encouraged more New Yorkers to get their shots.

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With fourth COVID-19 vaccine doses looming, experts say not so fast

With fourth COVID-19 vaccine doses looming, experts say not so fast
With fourth COVID-19 vaccine doses looming, experts say not so fast
IMAGINESTOCK/Getty Images

(NEW YORK) — Even as most eligible Americans have yet to receive their first COVID-19 vaccine boosters, Pfizer and Moderna have now asked the Food and Drug Administration to authorize yet another booster dose — especially for elderly Americans, a group that tends to have weaker immune protection.

Pfizer asked the FDA to authorize fourth doses for people older than 65, while Moderna asked for authorization for everyone 18 and older (though company executives said the greatest need would be among older adults).

With the FDA advisory committee not slated to meet until April 6, and no vote scheduled, it could take the FDA weeks to decide whether or not to authorize Pfizer and Moderna’s fourth dose applications.

Meanwhile, many vaccine experts are not convinced fourth doses are needed so soon. Some are even skeptical fourth doses will be needed at all. And that is on top of the difficulty in getting millions to get their first and second shots, let alone their third and fourth.

“There are very few, if any, people who, in my opinion require a fourth dose,” said Dr. Anna Durbin, professor of international health and director of the center for immunization research at Johns Hopkins Bloomberg School of Public Health.

“In general, it’s too early to recommend a fourth dose, except for those who are immune compromised,” said Dr. Paul Goepfert, professor of medicine at the University of Alabama at Birmingham and an expert in vaccine design.

Roughly 3% of the U.S. population is immune compromised, and already eligible for fourth doses. But this group only includes people with very specific medical conditions, like cancer or organ transplant recipients — not the estimated 54 million adults over 65.

Not enough evidence yet for fourth shots: Experts

So far, many experts say there isn’t enough evidence to justify fourth doses, even for older adults, though more evidence could emerge in the future. Studies from Israel, a nation that has already implemented fourth doses, indicate that boosting again modestly enhances protection from infection.

In the study, 18% and 20% of healthcare workers who got a fourth shot of Pfizer or Moderna, respectively, developed an omicron infection. Among those with three shots — about 25% developed an omicron infection.

Although the existing COVID-19 vaccines are overwhelmingly safe, they do come with temporary side effects and the rare risk of temporary heart inflammation called myocarditis among young men.

“Unless there’s clear evidence something is of value, don’t give it,” said Dr. Paul Offit, director of the Vaccine Education Center at Children’s Hospital of Philadelphia.

With Moderna and Pfizer now submitting fourth-dose booster data to the FDA on an ongoing basis, the FDA has convened meetings of its outside vaccine advisors to discuss the future of COVID-19 booster shots, how often they might be needed and whether variant-specific versions could be more beneficial.

With the FDA advisory committee not slated to meet until April 6, and no vote scheduled, it could take the FDA weeks to decide whether or not to authorize Pfizer and Moderna’s fourth dose applications.

Emphasis on boosters misplaced

For Offit, a vocal member of the FDA’s advisory committee, the national emphasis on booster shots has been somewhat misplaced. The primary goal of vaccines should be to protect against serious illness, he says, which overall, primary vaccines are still doing.

When the vaccines were first launched in December 2020, emphasis was placed on their ability to protect against COVID-19 infection. But now, with the passage of time and emergence of new variants, many vaccine experts argue this was always an impossibly high standard to maintain, and moving forward, the emphasis should be on their ability to protect against severe disease.

Now, more than a year later, data shows that boosters may shore up the body’s defenses against mild infections — but only temporarily.

“These vaccines continue to demonstrate high protection against hospitalization and severe disease,” Durbin agreed. “Prevention of infection, in my opinion, is not the metric that we should use.”

“We’re going to have to learn to live with mild disease at some point,” said Offit. Frequent boosting “is not a reasonable thing to do, and it’s not something most people will do anyway.”

Tailored vaccine may be better

A better approach, said Durbin, would be to roll out a tweaked vaccine that is a better match against the new omicron variant. Vaccine makers agree, with Pfizer and Moderna both studying new versions of their vaccines they hope will work better and offer more durable protection against current and future variants.

“We can’t have vaccines every five, six months,” said Pfizer CEO Albert Bourla, speaking on CNBC.

But until they have new-and-improved boosters ready to go, Pfizer and Moderna executives argue fourth doses will be needed by at least some older Americans soon.

In the United States, vaccination rates have stalled. Roughly a quarter of eligible adults have yet to receive their first vaccine doses, while about half of vaccinated adults have yet to receive their first boosters.

Dr. Anthony Fauci told ABC affiliate KGTV that older Americans might need a fourth dose “sooner or later,” but not yet.

The effectiveness of three shots is “holding pretty strong at around 78% efficacy against hospitalization,” Fauci said, “but if it goes any significantly lower than that, you certainly would consider the possibility of a fourth dose boost particularly among elderly and those with underlying diseases.”

At a White House briefing Wednesday, Fauci said fourth shots for older adults might be considered soon, but for the general population won’t be considered until “the beginning of fall, end of summer.”

While many vaccine experts have predicted that COVID-19 vaccination will become an annual shot, like the flu vaccine, others are still hopeful that three shots could be the magic number for many Americans.

“I do think three doses will be enough for some individuals,” said Goepfert, “but it depends on the new variants that will come next.”

Copyright © 2022, ABC Audio. All rights reserved.

COVID long-hauler marks two years grappling with ‘bewildering array’ of symptoms

COVID long-hauler marks two years grappling with ‘bewildering array’ of symptoms
COVID long-hauler marks two years grappling with ‘bewildering array’ of symptoms
Jennifer Dornan-Fish

(NEW YORK) — Jennifer Dornan-Fish is marking two years grappling with the long-term impacts of COVID-19 on her body.

She said her road to recovery from the virus has been mired in a “bewildering array” of agonizing and debilitating new symptoms — which gradually emerged after she had already fended off her initial infection.

A couple weeks after testing positive in March 2020, it seemed like Dornan-Fish had made it mostly out of the woods. However, the healthy 46-year-old said she struggled with COVID fatigue and labored breath but avoided hospitalization.

She said she was “convincing myself I was on the mend” and was anxious “to jump back into” her busy life finishing her next book and homeschooling her son. But then, “everything started going haywire.”

Dornan-Fish told ABC News her doctors have diagnosed her with Post-Acute Sequelae of SARS-CoV-2 infection (PASC) — the official term for long COVID symptoms. She has been tested for autoimmune issues like lupus, multiple sclerosis, Ankylosing spondylitis, along with blood cancers, to rule other, non-COVID causes out.

“It wasn’t like I just crashed all at once,” Dornan-Fish, now 48, said. “One little thing went wrong. Then another. And it just got worse and worse until – I have honestly very little memory of the first few months. I was so out of it.”

She began getting painful, itchy rashes on her thigh and shoulder, and her gums.

Then came “coat hanger pain” in her shoulders and neck. Then the brain fog. The front of her throat felt tight, as though an invisible hand was clamping down on her breath.

“I call it the ‘COVID choke,'” she said.

“I could barely talk,” she said. “The brain fog has really, to be honest, been the most disturbing symptom of them all. I make my living writing, thinking, so to not be able to do that was terrifying.”

Getting out of bed for more than a few minutes would take everything she had.

“My husband had to feed me, he would bring me meals. I could barely sit up. I couldn’t wash myself. I couldn’t take care of my child,” she said. “I was just surviving.”

In that first year of the pandemic, scant medical treatment existed for the mysterious virus which had overrun intensive care units around the world — let alone a tried-and-true way to fight COVID’s prolonged effects.

Dornan-Fish saw a “round-robin” of specialists — a “trial and error” process, which she said has been exhausting.

“I tried a million different things,” she said.

She started getting new allergies: she was hospitalized for a reaction to baby aspirin, which she had been taking to avoid the blood clots she had heard were associated with COVID. She had a reaction to her family’s longtime kitchen cleaner.

“I almost went into anaphylaxis from a scented trash bag,” she said.

About nine months out from her initial COVID infection, Jennifer started having tremors.

“My doctor called them ‘seizure-like,'” she said. “We don’t know what they were.”

Over time, her allergies seemed to start improving. Her brain fog got a little better. But the tremors got “much worse,” and took new forms.

“I’m not actually shaking on the outside, but it feels like a vibrating cell phone in my chest. Or, like there’s an earthquake inside me,” she said.

“For a little while — and it has gotten better — but a bird would cheep outside the window, and I would jump,” she said. “Not to be glib, but I’ve lived in the jungles of Belize and have killed poisonous deadly snakes with machetes. Like, I do not jump at cheeping birds.”

Her son, now 13 years old, has seen how post-COVID has ravaged her health.

“He sometimes says, ‘mom, when you’re better, I can’t wait ’til we play this game again,'” she said. “‘When you’re better–‘ it breaks my heart.”

What was once understood as a respiratory virus has emerged, for many, as an all-out attack on the system. Researchers are pushing to find better treatments to help long-haulers — and better answers to understand why they’re impacted for so long, with more than a billion federal dollars devoted to studying COVID’s prolonged health consequences.

Some theories from experts include a person having a particularly high viral load when they first get sick; or lingering COVID viral particles sticking around in the body even after a person has “cleared” their initial infection; or another virus that was previously latent getting reactivated, like Epstein-Barr.

After even a mild initial infection, many COVID survivors across a diverse age group still report exhaustion, cognitive problems and other symptoms. Studies so far estimate as much as 10% to 30% of people who get COVID may later develop long-hauler symptoms.

It has not been a comfortable adjustment for Dornan-Fish. Before COVID, she recalled being able to hike and run for more than 10 miles at a time.

“Before COVID, I took a daily multivitamin,” she said. “Now I take four medications, eight supplements, every day. Two years later, I still have tremors, rashes, crushing fatigue, nerve pain and a swelling throat.”

Of the treatments she has tried, it’s “hard to tell whether it’s my body naturally healing? Or are these things that I’m trying working?” she said.

Meanwhile, physicians have focused on managing symptoms. While firmer treatment protocols are under review, at this time, there are no conclusive data or recommendations regarding the use of supplements in the treatment of long-COVID.

At first Dornan-Fish said she took a beta blocker, a medication sometimes used for postural orthostatic tachycardia syndrome (POTS), which helps to reduce heart rate. That seemed to help, she said, but had to stop when it dropped her blood pressure too low.

D-ribose, a carbohydrate naturally produced by the body and supplement aimed at boosting energy, was the first thing she said helped her move around more regularly. She’s been taking high-dose B vitamins, CoQ10, and NADH, which she said have helped boost her energy. She’s been taking Dexedrine for the brain fog — a stimulant approved by the Food and Drug Administration to treat ADHD and narcolepsy, which works by increasing the release of neurotransmitters involved in memory, attention and mood.

She has also taken Ketotifen — an eyedrop antihistamine. She said she has also taken DHA; D and K vitamins; and Floradix for anemia.

She said meditation and breathwork have also helped calm her autonomic nervous system. Gradually, Dornan-Fish has felt some of her strength return.

“I’m ready for a game changer,” she said. “It doesn’t have to be a silver bullet, but I would definitely like something that makes a more significant difference in my ability to function.”

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