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.

Copyright © 2022, ABC Audio. All rights reserved.

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.”

Copyright © 2022, ABC Audio. All rights reserved.

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.

Copyright © 2022, ABC Audio. All rights reserved.

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.”

Copyright © 2022, ABC Audio. All rights reserved.

Mom on mission to show daughter with rare birthmark that she is beautiful

Mom on mission to show daughter with rare birthmark that she is beautiful
Mom on mission to show daughter with rare birthmark that she is beautiful
Nicole Lucas Hall

(NEW YORK) — One mother is dedicated to reaffirming that her daughter is beyond beautiful.

Nicole Hall’s daughter, Winry, was born with an extremely rare birthmark called congenital melanocytic nevi, or CMN. As such, the 13-month-old has a trait that makes her distinct from other children.

“When they first handed her to me, I thought it was a bruise,” Hall told ABC News’ Good Morning America. “It was then quickly apparent to my husband and I that it was not a bruise. And like the name, I thought it looked a lot like a mole.”

According to the report by the National Organization for Rare Diseases by Dr. Harper Price of Phoenix Children’s Hospital and Dr. Heather Etchevers of Marseille Medical Genetics, CMN can be light brown to black patches, can present in various ways, and may cover nearly any size area or any part of the body.

Instead of being sad about her daughter’s circumstances, Hall said she utilized the power of social media to promote awareness about CMN and to encourage others that being “different” is your superpower.

“For a lot of people, this is the first time seeing a birthmark like hers and that’s part of why I enjoy sharing,” Hall said. “This is a good conversation for parents with their children to see kids have differences, or for those parents who do have a kid that looks like Winry or has any kind of a birthmark to see their child represented.”

According to the Children’s Hospital of Philadelphia, Winry’s diagnosis could put her at a higher risk of developing melanoma. But Hall said she worries less about the risk of cancer than about the frequency of bullying she may experience as she gets older.

Still, Hall said she stays on top of things by taking extra measures to protect her skin.

“Her health and happiness are our top priority. We have to monitor her with sunscreen. I’m careful with hats and that sort of thing,” Hall said. “I know our regular dermatology appointment is probably going to be our best friend growing up.”

Her mom said Winry’s character is what truly sets her apart.

“She just radiates joy. She’s almost always laughing or shrieking. She is just the happiest baby I have ever seen,” Hall said. “She’s a big talker already. We haven’t got a whole lot of words out, but she tells you like it is and she’s already getting a little bit of sassiness, so I think we’re gonna have a lot on our hands.”

The massive following she has cultivated on TikTok has allowed Hall to virtually meet people from across the globe with a similar background to her daughter.

“We’ve got to talk to several people from Brazil with birthmarks,” Hall said. “One of them has one that is almost identical to Winry and it’s been so fun to talk to her because she’s almost exactly my age.”

Copyright © 2022, ABC Audio. All rights reserved.

COVID-19 vaccine for kids: Moderna to seek emergency use authorization for vaccine in kids under 6

COVID-19 vaccine for kids: Moderna to seek emergency use authorization for vaccine in kids under 6
COVID-19 vaccine for kids: Moderna to seek emergency use authorization for vaccine in kids under 6
Witthaya Prasongsin/Getty Images

(NEW YORK) — Two years into the coronavirus pandemic, children under age 6 may be one step closer to being eligible to get vaccinated against COVID-19.

Moderna said Wednesday it plans to seek emergency use authorization from the U.S. Food and Drug Administration for its COVID-19 vaccine in young children “in the coming weeks.”

Pfizer’s vaccine is authorized in children 5 and older, but children 4 and younger don’t have access to vaccination.

Moderna released new clinical trial data showing its vaccine generated a strong immune response in children ages 6 months to 6 years old, with no significant risks.

Moderna’s vaccine in children is a two-dose, 25-microgram shot, about a quarter of the dose used for adults, given 28 days apart.

Moderna’s COVID-19 vaccine is currently only available for people ages 18 and older.

Here are nine questions answered about the COVID-19 vaccines and kids as families seek to make the best decisions.

1. What is the science behind the COVID-19 vaccine?

Both the Pfizer and Moderna vaccines use mRNA technology, which does not enter the nucleus of the cells and doesn’t alter human DNA. Instead, it sends a genetic “instruction manual” that prompts cells to create proteins that look like the outside of the virus — a way for the body to learn and develop defenses against future infection.

The Johnson & Johnson vaccine uses an inactivated adenovirus vector, Ad26, that cannot replicate. The Ad26 vector carries a piece of DNA with instructions to make the SARS-CoV-2 spike protein that triggers an immune response.

This same type of vaccine has been authorized for Ebola and has been studied extensively for other illnesses and for how it affects women who are pregnant or breastfeeding.

Neither of these vaccine platforms can cause COVID-19.

2. What is the status of vaccine eligibility for kids?

Children ages 5 and older are now eligible to receive Pfizer’s two-dose vaccine.

Children ages 12 and older are also eligible to receive a Pfizer vaccine booster shot.

Pfizer is expected to have more information on the efficacy of a three-dose regimen for kids under age 5 in March or April. The company announced in February that it would postpone its application to the FDA for a vaccine for kids under 5 and instead continue with its study on the three-dose vaccine and seek authorization when that data is available.

The two other vaccines currently available in the U.S., Moderna and Johnson & Johnson, are currently available only for people 18 years and older.

Moderna said on March 23rd it plans to seek emergency use authorization from the FDA for its vaccine in children under age 6 “in the coming weeks.”

3. Why do kids need to be vaccinated against COVID-19?

While there have not been as many deaths from COVID-19 among children as adults, particularly adults in high-risk categories, kids can still get the virus and they can also transmit the virus to adults.

A total of 11.4 million children have tested positive for the virus since the onset of the pandemic. Child COVID-19 cases have “spiked dramatically” during the omicron variant surge, with more than 3.5 million child cases reported in January.

According to the CDC, unvaccinated 12- to 17-year-olds had an 11 times higher risk of hospitalization than fully vaccinated adolescents.

“We know that COVID does not spare kids,” ABC News medical contributor Dr. John Brownstein, an epidemiologist and chief innovation officer at Boston Children’s Hospital, said in December. “Maybe it’s less severe than their adult counterparts but we also know that the virus has had real significant impacts on morbidity and mortality in kids.”

“We also know that kids play an important role as vectors of spread,” he said. “And especially in light of increases we’re seeing right now, with increases of cases in kids in record numbers, infections among kids further perpetuate community transmission and further create risks for those who would be the most vulnerable of the virus.”

4. Do kids experience the same vaccine side effects as adults?

Adolescents experienced a similar range of side effects to Pfizer’s vaccine as seen in older teens and young adults — generally seen as cold-like symptoms in the two to three days after the second dose — and had an “excellent safety profile,” Peter Marks, director of the FDA’s Center for Biologics Evaluation and Research, said in August.

None of the children in Pfizer’s clinical trials of kids ages 5-11 experienced a rare heart inflammation side effect known as myocarditis, which has been associated with the mRNA vaccines in very rare cases, mostly among young men.

5. Is there data showing COVID-19 vaccines are safe for kids?

The CDC released three studies in December showing COVID-19 vaccines are safe and effective for children.

One study, which evaluated the safety reports of more than 42,000 children ages 5 to 11 who received a Pfizer shot, found the side effects from the Pfizer vaccine were mostly mild and temporary. It also found that myocarditis, a heart inflammation side effect that has been associated with the mRNA vaccines in very rare cases, does not appear to be a risk.

A second study, which looked at data from 243 children ages 12 to 17 in Arizona, found the Pfizer vaccine was 92% effective at preventing infection. The study, conducted between July and December when delta was the dominant variant in the U.S., also found that adolescents who developed COVID-19 reported a lower percentage of time masked in school and time masked in the community.

The third study, also conducted when delta was dominant, found that among children ages 5 to 17 hospitalized due to COVID-19, less than 1% were fully vaccinated against the virus.

6. How effective are the vaccines in children?

Pfizer announced in late March that its clinical trials showed the vaccine was safe and 100% effective in children ages 12-15, similar to the 95% efficacy among adult clinical trial participants.

Marks confirmed on May 10 that after a trial with more than 2,000 children, Pfizer found no cases of infection among the children who had been given the vaccine and 16 cases of infection among the children who received a placebo.

No cases of COVID occurred in the 1,005 adolescents that received the vaccine, while there were 16 cases of COVID among the 978 kids who received the placebo, “thus indicating the vaccine was 100% effective in preventing COVID-19 In this trial,” said Marks.

7. Do kids get the same dose of the vaccines as adults?

In Pfizer’s clinical trial, children between 6 months and 5-years-old received two doses of 3-microgram shots, a tenth of the dose given to adults, three weeks apart.

Kids ages 5 to 11 are given a 10-micrograms dose of the Pfizer vaccine, one-third of the adolescent and adult dose. Like with adults and adolescents, the pediatric vaccine is delivered in two doses, three weeks apart.

For 12-to-15-year-olds, the FDA has authorized the same dosing as adults with the Pfizer two-dose vaccine.

The FDA and CDC have recommended the Pfizer booster shots now available for kids ages 12 and older be administered five months after the primary vaccine series.

8. Could COVID-19 vaccines impact puberty and menstruation?

There is currently no clinical evidence to suggest any of the COVID-19 vaccines can have long-term effects on puberty or fertility.

9. Where can kids get vaccinated against COVID-19?

Vaccines are accessible at pediatricians’ offices, children’s hospitals, pharmacies like CVS, Walgreens and Rite-Aid and school and community-based clinics.

Parents can search for appointments at Vaccines.gov to find a local provider.

ABC News’ Sasha Pezenik, Anne Flaherty, Eric Strauss, Cheyenne Haslett and Jade A. Cobern, MD, a member of the ABC News Medical Unit, contributed to this report.

Copyright © 2022, ABC Audio. All rights reserved.

Moderna will seek FDA emergency use authorization for its vaccine in kids under 6

Moderna will seek FDA emergency use authorization for its vaccine in kids under 6
Moderna will seek FDA emergency use authorization for its vaccine in kids under 6
Morsa Images/Getty Images

(NEW YORK) — Moderna said it plans to seek emergency use authorization from the U.S. Food and Drug Administration for its COVID-19 vaccine in children under age 6.

The company released clinical trial data Wednesday showing neutralizing antibody levels were similar to those seen in adults.

The vaccine in children is a two-dose, 25-microgram shot, about a quarter of the dose used for adults.

Copyright © 2022, ABC Audio. All rights reserved.

What to know about egg freezing — from when to do it, to how much it costs

What to know about egg freezing — from when to do it, to how much it costs
What to know about egg freezing — from when to do it, to how much it costs
fstop123/Getty Images

(NEW YORK) — Egg freezing — a process that involves collection, freezing and storage of a woman’s eggs with the intention to use at a later time for pregnancy — is more widely available than it was even five or 10 years ago, but it is still a complicated decision for many women.

There is the cost — often thousands of dollars — as well as the fact that a woman’s biological clock keeps ticking even amid egg freezing.

There is also the unknown for so many women around egg freezing, from what exactly it entails to how often it works to any potential side effects to what it means to keep eggs in storage for possibly years.

When Courtney Hunt, 34, of New York, decided to freeze her eggs nearly two years ago, she chose to document the process and share it on her YouTube channel.

“I wanted to document this whole process because I think it’s important to really open the conversation,” Hunt told ABC News’ Good Morning America. “By documenting it, I could help educate people, inform people, and kind of just give women in general an opportunity to see another woman kind of going through [the process].”

She continued, “I think we do often feel alone in a lot of these experiences because we don’t talk about about a lot of these [topics] in conversations, miscarriages or IVF or egg freezing.”

GMA reached out to medical experts to talk more about the egg freezing process and what women should know. Here are five questions answered by the experts:

1. Why are more and more women turning to egg freezing?

After over 30 years of advancements since the first human birth from a frozen egg was reported in 1986, egg freezing is now widely available to women who may choose to delay child-bearing.

Traditionally, women resorted to egg freezing due to medical conditions such as a cancer diagnosis requiring chemotherapy, which can damage reproductive cells, or genetic abnormalities that shorten reproductive years. In 2012, the American Society for Reproductive Medicine lifted the “experimental” label from egg freezing, allowing it to be utilized more widely.

The number of women who utilize egg freezing is expected to continue to grow as the technology becomes more accessible and better understood, experts say.

Over 22,000 egg freezing cycles were performed in the United States in 2019, up from around 18,000 in 2018 and 14,500 in 2017, according to the Centers for Disease Control and Prevention.

“There is just more information out there now for women,” Dr. Elizabeth Sarah Ginsburg, medical director of assisted reproductive technologies at Brigham and Women’s Hospital in Boston, told ABC News. “Women are now more aware of the age-related decline in fertility that women experience.”

While there are many medical reasons for egg freezing, today many women are also turning to egg freezing to focus on their careers or postpone having children until they are partnered.

“Most of the women that I see are freezing their eggs because they don’t have a partner,” Ginsburg said, also adding, “I’ve had women who are married freeze eggs to start their own companies or because they’re up for a promotion and they know their eggs are aging but can’t take time out to have a baby.”

In Hunt’s case, she said she took advantage of the opportunity to freeze her eggs when she learned the process was paid for by her then-employer. She said she did it as assurance that when she is ready to have kids, the option is there.

“It was never a battle in my mind of all the what-ifs and what if this doesn’t happen with a partner or what if this does,” said Hunt. “I was just doing this, selfishly, for myself to make sure that I do have an opportunity if and when I want kids, however that comes about for myself.”

2. What is the process of egg freezing?

The egg freezing process involves four main steps — ovarian stimulation, a trigger shot, egg retrieval and egg freezing.

The total time commitment for an egg freezing cycle is about two to three weeks and involves continuous monitoring with ultrasounds to time each of the steps.

Ovarian stimulation involves self-administering daily injections for about two weeks to grow multiple eggs in the ovaries to eventually collect and freeze. For many, this step may be the most physically and emotionally draining.

“Making sure you’re doing things right in such a delicate and, frankly, expensive process is something that even worried me when I knew what I was doing,” said Dr. Samantha Estevez, a clinical fellow in the division of reproductive endocrinology and infertility at the Icahn School of Medicine at Mount Sinai who went through the egg freezing process herself.

Most commonly, women experience mild fullness, bloating and cramping during their cycle.

“The ovaries get pretty big. A normal ovary, not stimulated, is about the size of a walnut. In women who stimulate a lot and get say 20 eggs, ovaries will be the size of an orange,” Ginsburg said.

Once the eggs reach their target size, a different injection, referred to as the “trigger shot,” is administered to make the eggs undergo their final maturation for retrieval.

The egg retrieval procedure is then typically scheduled 36 hours after this injection. This is a procedure done under sedation with vaginal ultrasound guidance to collect the matured eggs.

After the eggs are collected, they are then frozen in liquid nitrogen and stored until the person decides to come back for them.

For those who return for their eggs with the hopes of becoming pregnant, the frozen eggs are thawed and fertilized in the laboratory using donor or partner sperm to make embryos and undergo genetic testing if desired, then transferred into the uterus for pregnancy.

3. What is the cost of egg freezing?

The cost of egg freezing can be highly variable. For anyone considering egg freezing, experts recommend understanding the breakdown of the costs and the factors that can influence these costs to estimate final costs for an individual.

“There is usually a global fee that includes all the monitoring, the anesthesia, egg retrieval and freezing for that cycle of the two-week period from that first ultrasound to the egg removal and freezing of the eggs,” Ginsburg said, adding that the net cost for an individual may be higher or lower depending on insurance, employer, region and the fertility center. “Patients really need to call around to find out.”

At CCRM, a fertility clinic network with 11 locations across the U.S. and Canada, the average cost of a single egg freezing cycle is $9,232, according to Dr. Jaime Knopman, a board-certified reproductive endocrinologist at CCRM New York.

Other expenses, including medications and anesthesia, total over $6,000 on average at CCRM, according to Knopman, who added that the cost depends on each individual person.

“Older women or those with lower ovarian reserve would pay more in total, but not because the process is more expensive,” said Knopman. “The cost is higher because medication dosage is higher, and therefore the cost of medications is higher.”

People who are older may also need to do more than one cycle of egg freezing, which comes at an additional cost, Knopman explained.

After the egg retrieval, storage comes at an additional cost depending on how long a person would like to freeze their eggs. Storage can cost anywhere from a few hundred dollars to over $1,000 per year.

At CCRM, for example, the average annual cost of storage is $775.

If a person ultimately decides to use the eggs they have frozen, there is also additional cost involved.

“People going into egg freezing also need to recognize that this is just the first step, not the final step when it comes to fertility preservation if they end up using the eggs,” Estevez said. “The transfer cycle is less involved than egg freezing cycle but almost financially equivalent.”

Knopman said she tells patients at CCRM to expect to pay around $10,000 for a frozen embryo transfer, a total that includes medications and the process itself.

Some larger companies such as Facebook, Google and The Walt Disney Company offer egg freezing benefits to their employees, and some health systems have also started to pay for it for their employees, which can make egg freezing more affordable.

As of 2021, 15 states have laws that require insurance companies to cover infertility treatment and two states have laws that require insurance companies to offer coverage for infertility treatment, according to the National Conference of State Legislatures (NCSL).

4. What is the right age to consider egg freezing?

Although most women who undergo egg freezing in the U.S. are in their late 30s, the younger you are, the better, data shows.

According to a study published in 2020 in the journal Human Reproduction, success rates for live births were double for women who stored their eggs at age 35 and younger.

“There is no question that pregnancy rates are higher if women are younger,” said Ginsburg, adding that, “A higher percentage of eggs in the ovaries are chromosomally abnormal the older women get, so the less likely a particular egg is to result in a pregnancy.”

Once a woman reaches the age of 30, her fertility starts to decline, according to Dr. Nita Landry, a Los Angeles-based board-certified OBGYN.

“Once she reaches her mid-30s, especially around 37, that decline becomes faster,” Landry said. “Once a woman is 45 years of age, the probability of her conceiving without any fertility intervention is going to be low.”

The risks associated with pregnancy also increase as a woman ages.

Studies show that women who become pregnant at an advanced age inherently have an increased risk for pregnancy complications such as gestational diabetes, hypertension, pre-term birth and low birth weight.

Therefore, women who get pregnant in their late 30s or 40s may not have successful pregnancies regardless of how old their eggs were when they were frozen.

5. What are alternatives to egg freezing?

There are options other than egg freezing for those who are not partnered but are ready to become parents now. Women can get pregnant using their own eggs with donor sperm rather than freeze and store their eggs.

“Some women think about freezing eggs and when they realize they really want a baby and decide that a partner is not critical to their life being fulfilled, donor insemination is the other way to go,” Ginsburg said. “That tends to happen more in women in their late 30s.”

Some also choose to freeze embryos rather than eggs because of higher success rates for live births.

“Often when someone is married, they will freeze part eggs and part embryos because of the fact that if a man gives his sperm and embryos are frozen, he has a say in whether they can be used or not later,” Ginsburg said. “So I think egg freezing is favored from a reproductive autonomy standpoint.”

Women now have many options in reproductive technologies. Although costs remain a barrier for many, these technologies may become more affordable as they continue to grow in popularity.

“I think insurance companies are doing better and better about paying for egg freezing that is medically indicated,” Ginsburg said. “I think it’s also going to increasingly be a benefit of employment especially in firms that are trying to increase the number of women in their ranks.”

Copyright © 2022, ABC Audio. All rights reserved.

COVID-19 infection increases risk of developing diabetes, study finds

COVID-19 infection increases risk of developing diabetes, study finds
COVID-19 infection increases risk of developing diabetes, study finds
Morsa Images/Getty Images

(NEW YORK) — COVID-19 survivors are at increased risk of being newly diagnosed with diabetes up to one year after recovering, a new study suggests.

Researchers from VA Saint Louis Health Care System found people who recovered from COVID were 40% more likely to develop a new case of diabetes compared to a control group.

This translates to 1 in 100 people at increased risk of developing diabetes after a COVID-19 infection. As of Monday, 79.5 million people have been infected with COVID-19 in the U.S., according to the Centers for Disease Control and Prevention, meaning there could 795,000 new diabetes diagnosis as a result.

“That’s hard for me to swallow,” Dr. Ziyad Al-Aly, chief of research and development at VA Saint Louis Health Care System, and lead author of the study, told ABC News. “COVID-19 isn’t only about the acute effects. This is going to leave a lot of people with long-term health consequences that they’ll have to deal with for a lifetime and that’s jarring. It’s unsettling to accept.”

For the study, published Monday in the journal Lancet Diabetes & Endocrinology, the team looked at patient data from the U.S. Department of Veterans Affairs between March 1, 2020 and Sept. 30, 2021.

They compared more than 181,000 patients who had tested positive for COVID-19 to more than 4.1 million patients who were not infected over the same period. The data was also compared to another 4.28 million patients who were treated at the VA in 2018 and 2019.

Al-Aly said the team initially thought the increased risk would only be seen among people who have risk factors for diabetes such as obesity, but the findings showed the risk was evident across all groups.

“It was evident in Black people and white people; it was evident in young folks and in older folks; it was evident in males and females; and, most importantly, it was also evident even in people who had no risk factors for diabetes at all,” he said.

He added that there are a few theories of how COVID increases the risk for diabetes, although none have been proven or refuted.

One theory is that COVID-19 drives inflammation that may impair insulin secretion and sensitivity. Another is that COVID-19 causes disturbances in microbiome composition and function, that may lead to diabetes.

The findings add to a growing body of evidence that COVID-19 infection can lead to long-term health consequences.

Al-Aly said when most people think of long-lasting health effects following COVID, they think of shortness of breath, difficulty concentrating and sleep disorders.

But more and more studies have shown COVID survivors can suffer from heart problems, kidney problems and, in this case, diabetes.

“Over the past year or so, we started noticing in some patients that those [long-term] manifestations are not just fatigue and brain fog, but people are coming down with new onset diabetes,” he said.

Of the patients who did develop diabetes more than 99% developed type 2 diabetes, which is the most common form of diabetes and occurs when cells become resistant to insulin — the hormone that regulates blood sugar,

Because of insulin resistance, the pancreas must make more insulin to try to get cells to respond and this leads to high blood sugar levels.

This is different from type 1 diabetes, which is usually diagnosed in children and teens, and occurs when the pancreas doesn’t make insulin or makes very little insulin.

The new study is not the first that has linked COVID-19 infection to diabetes.

In a study published last week, researchers from the Leibniz Center for Diabetes Research at Heinrich Heine University in Düsseldorf, Germany, found a 28% increased risk of type 2 diabetes for those who had previously had COVID-19.

Al-Aly said the best way to lower the risk of diabetes is for people to prevent themselves from getting COVID-19 in the first place via vaccination.

But for people who have already caught the virus, they should watch for warning signs of diabetes such as excessive thirst and frequent urination.

“Those are signs of diabetes, and we need you to get checked because catching this early and identifying diabetes early and treating it, or nipping it in the bud, is always better than leaving it unattended for years and suffering even worse or more serious health consequences,” Al-Aly said.

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