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Pandemic’s Toll on Mount Sinai Front-Line Staff Is Surveyed, and Addressed

Updated on Jun 30, 2022 | COVID-19, Featured, Mental Health, Psychiatry, Research

Recharge rooms were created across the Health System in one of many initiatives informed by surveys of front-line staff.

Front-line staff who were already feeling burnout showed the most signs of mental distress during the height of the COVID-19 pandemic, while those who fared best had an active social network and felt supported by their supervisors. These were among the many lessons learned by a team of Mount Sinai researchers based on two surveys of front-line Mount Sinai staff in 2020.

“The main takeaway is what most people would expect—that if you’re involved in health care during a pandemic, it’s going to take its toll,” says Jonathan Ripp, MD, MPH, Dean for Well-Being and Resilience and Chief Wellness Officer at the Icahn School of Medicine at Mount Sinai. “But beyond that, we were able to identify what types of things may put you at greater or lesser risk of these mental health outcomes, and inform how we can try to mitigate them.”

The results were used in real time to develop programs to help Mount Sinai staff handle the pressures of the pandemic, Dr. Ripp says, and they are being shared with other institutions through journal publications and a Well-Being Toolkit developed by the Office of Well-Being and Resilience.

The three mental health outcomes studied were depression, anxiety, and post-traumatic stress disorder related to the COVID-19 pandemic. Among the more than 3,000 front-line staff members who responded to an initial survey in April and May 2020, 39 percent screened positive for at least one of these outcomes. The most significant factor predicting mental health symptoms was the presence of pre-pandemic burnout, according to studies published by the Mount Sinai team in The Journal of Clinical Psychiatry and Chronic Stress.

At the start of the pandemic, Mount Sinai focused on meeting the basic needs of front-line staff, such as providing free or subsidized food onsite.

“This means that if you already felt exhausted, fatigued, and detached from your work, you were more likely to develop these mental health symptoms during the pandemic,” says investigator Lauren Peccoralo, MD, MPH, Senior Associate Dean for Faculty Well-Being and Development, and Associate Professor of Medicine at the Icahn School of Medicine at Mount Sinai. The research team emphasized that burnout is distinct from other mental health issues in that it is more a function of the work environment, and can be remedied by strategies that support workers.

In the earliest days of the COVID-19 pandemic, the Office of Well-Being and Resilience assembled a group of researchers with backgrounds in psychology, psychiatry, survey design, and statistical analysis to examine its mental health consequences on the workforce, in an effort initiated by Dennis S. Charney, MD, Anne and Joel Ehrenkranz Dean, Icahn School of Medicine at Mount Sinai, and President for Academic Affairs, Mount Sinai Health System.

The group sent surveys to more than 6,000 physicians, nurses, social workers, chaplains, and other front-line staff at The Mount Sinai Hospital during the height of the pandemic’s first wave in April and May 2020 and again seven months later. In the first survey, more than 3,000 respondents answered questions from three diagnostic series: the General Anxiety Disorder 7, the Personal Health Questionnaire 8, and the Post Traumatic Stress Disorder checklist. In the self-screening for depression, for example, about 26 percent of respondents reported that on more than half the days of the week, they felt such symptoms as taking little interest or pleasure in doing things, feeling hopeless, losing their appetite, having trouble staying or falling asleep, or difficulty concentrating.

The survey also asked open-ended questions about the respondents’ concerns. “There were a lot of infection-related worries. People were worried about PPE, about infecting colleagues or bringing COVID-19 home to their family members,” says Jordyn Feingold, MD, an investigator in the study, who graduated from Icahn Mount Sinai in May 2020 and is now a psychiatry resident. “There were worries about basic needs like getting food at work, and existential worries like ‘When is this going to end?’ and ‘When is life going to return back to normal?’”

The aid facilitated by the research team fell into three categories: providing basic needs like food and the proper personal protective equipment (PPE) and other materials; providing up-to-date information through channels including web sites and system-wide email broadcasts; and creating well-being spaces and onsite mental health and peer support to reduce the stress experienced by health care workers.

A Second Survey Finds an Increase in Burnout

The surveys also asked questions related to resilience, Dr. Ripp says. Specific factors that were found to be protective against mental health symptoms included getting enough sleep and exercise, having social emotional support, not using substances to cope, having sufficient PPE, and feeling supported by hospital leadership and valued by supervisors.

Simply feeling heard was also important, Dr. Feingold says. “Whether or not we have it in our control to fix all of these things right away,” she says, “just validating the concerns and letting people know that they’re not experiencing this in isolation, I think was really powerful.”

In the second survey, conducted from November 2020 to January 2021, more than 1,600 responded and of those, 786 staff provided follow-up responses on their mental health and well-being. The results indicate that mental health symptoms have declined, but the prevalence of burnout has increased, Dr. Peccoralo says. “We are still analyzing the data, but one thought is that the traumatic situation has largely gone away, but the work hasn’t. We’re all still working really hard, maybe even harder than we have ever worked before,” she says. “So we have to think about how we can tell if we are pushing people too much, and what we can do about it.”

The surveys have served an important role in helping Mount Sinai take care of its own, and in advancing knowledge of the mental health consequences of responding to a pandemic, Dr. Ripp says.

The needs identified in the surveys have informed the development of new initiatives, including the launch of the Center for Stress, Resilience, and Personal Growth, says its Clinical and Research Director, Jonathan DePierro, PhD, Assistant Professor of Psychiatry at the Icahn School of Medicine at Mount Sinai. The Center is an innovative service supporting the resilience and psychological health of all Mount Sinai faculty, staff, and trainees through a series of evidence-based resilience workshops, a resilience-promoting app available for download on Sinai Central, ongoing outreach efforts, and up to 14 treatment sessions in its confidential faculty practice.

“Let’s hope that it’s a very long time before something like this pandemic happens again, but should it happen, I think the lessons that we’ve learned can apply,” Dr. Ripp says. “And then of course we can share those lessons, so that other institutions that haven’t had the opportunity to study this trajectory can learn from our experience.”

Tina Aswani Omprakash: A Journey From Inflammatory Bowel Disease Patient, to Patient Advocate, to Master of Public Health Student

Updated on Jun 30, 2022 | Featured, School

Tina Aswani Omprakash

When Crohn’s disease forced Tina Aswani Omprakash to leave a career on Wall Street, she began looking for a way to rebuild her life. Having navigated the surgeries, the health disparities, and the South Asian cultural stigmas—shame and taboo—associated with inflammatory bowel disease (IBD) for more than a decade, Ms. Aswani Omprakash knew she had insights on IBD that could be beneficial for people of color facing the same challenges.

That revelation led her to the Master of Public Health (MPH) degree program at the Graduate School of Biomedical Sciences at the Icahn School of Medicine at Mount Sinai.

“I chose the program in part because I had heard Mount Sinai was accommodating of students with disabilities, and that was important to me in rebuilding my career and self-worth,” she explains.

“I gained a knowledge base that expanded my understanding of the disease and gave me insights to approach public health not just from my own personal experience, but from a broader health care perspective.”

A long-time patient advocate and public speaker who has presented at many domestic and international gastroenterology conferences, Ms. Aswani Omprakash is pursuing the General Public Health track to better understand the needs of different patient populations and develop her research skills. In 2020, she conducted a qualitative study, sponsored by the biotechnology company Genentech, on the unmet needs among diverse patients living with IBD. Her abstract was published in Inflammatory Bowel Diseases and presented at the 2021 Crohn’s and Colitis Congress.

“This was a groundbreaking study in that it was the first patient advocate-led study in the IBD space. I hand-picked and recruited patients of various races, ethnicities, genders, age groups, sexual orientations, and geographical locations via my social media presence,” Ms. Aswani Omprakash says. “Although the conclusions we came to were expected, the study helped to legitimize the needs and concerns of patients—such as more access to mental health care, improved access to specialists who understand the complexities of the disease, and better medications that target the disease in different communities.”

For her MPH Applied Practice Experience, Ms. Aswani Omprakash worked with the Leona M. and Harry B. Helmsley Charitable Trust on two projects: a guidebook for caregivers of children and adolescents with Crohn’s disease, created with the National Alliance of Caregiving, and a series of web pages detailing surgical treatment options, which she developed with the United Ostomy Associations of America. “These resources are designed to fill an information gap among health care providers and patients living with IBD, and to change perceptions of surgery as a last resort,” Ms. Aswani Omprakash says. “The fact that they are written by a patient who is earning an MPH further enhances the content.”

Nils Hennig, MD, PhD, MPH, Director of Mount Sinai’s Graduate Program in Public Health says: “Tina Aswani Omprakash is a great example of our patient-focused approach to public health. Proximity to the populations we serve is fundamental. The study of Public Health at Mount Sinai goes beyond mere analysis and repair: it offers choices, it provides a human touch, and it may ultimately help reestablish human dignity.”

Ms. Aswani Omprakash has been completing the program one course at a time and will graduate in December 2022. “This has been an incredible experience,” she says. “I gained a knowledge base that expanded my understanding of the disease and gave me insights to approach public health not just from my own personal experience, but from a broader health care perspective.”

To learn more about Ms. Aswani Omprakash’s patient advocacy journey, go to her blog at ownyourcrohns.com.

What Is the Delta Variant and Why Is It a Concern for Those Who Are Not Vaccinated

Updated on Jun 30, 2022 | COVID-19, Featured, Vaccines, Your Health

One of the latest terms to emerge from the pandemic is the Delta variant. This variant appears to be more contagious than previous variants and has become more common in the United States.

In this Q&A, Sean Liu, MD, PhD, an Assistant Professor of Medicine (Infectious Diseases) at the Icahn School of Medicine, says the spread of this variant is concerning because of the number of people who remain unvaccinated. Those who become infected with this variant pose an elevated risk to household members who are not vaccinated and to others they come in contact with, such as those with compromised immune systems—which includes those with chronic medical conditions and the elderly—who are not able to fight infections as easily as most. Dr. Liu is part of the team of experts at Mount Sinai who are at the forefront of research into vaccines and who are also on the front lines treating patients and helping to limit the spread of the virus in the New York metropolitan area.

Sean Liu, MD, PhD

What is the Delta variant?

All viruses, including the SARS-CoV-2 virus that causes COVID-19, will evolve over time. It is normal for a virus to change a little bit when it makes copies of itself, or replicates. These changes are called mutations. The virus with one or more new mutations is referred to as a variant. Genetic variants of SARS-CoV-2 have been emerging and circulating around the world throughout the COVID 19 pandemic. There are six variants of concern circulating in the United States; the Delta variant is one of these circulating variants. The Delta variant was first detected in December 2020, and recently this variant has been detected in more than 80 countries, and in all 50 states.

Why is there a concern over this variant?

The variants of concern show evidence of at least one of the following five properties:

The variant may spread more easily from person to person.
The variant may lead to more severe disease, including increased hospitalizations or deaths.
The variant may be significantly harder to combat by antibodies generated during a previous infection or vaccination.
Treatments or vaccines may show reduced effectiveness against the variant.
The variant may evade diagnostic detection.

The Delta variant, specifically, has three of these properties, one being increased transmissibility. There is a 1.6-fold increase in the odds of household transmissions for the Delta variant compared with the Alpha variant, also known as the UK variant.

Why is the issue of transmissibility so important?

The fact that this strain can spread so quickly means is that you have a higher likelihood of spreading the Delta variant if infected. As clinicians, we see a lot of COVID-19 spread throughout families. It’s very devastating among households, and this variant specifically has this increased transmissibility within a household. People who are unvaccinated are really putting their family members, or those in their household, at increased risk for severe disease, especially if they too are unvaccinated.

For those who are fully vaccinated, does the Delta variant pose a risk?

It is important to remember that the goal of the COVID-19 vaccines is to prevent severe infections, hospitalizations, and deaths. The mRNA-based vaccines are about 95 percent effective against hospitalization for COVID-19, with either one or two doses. Studies suggest that the Pfizer-BioNTech vaccine reduced the odds of symptomatic disease from the Delta variant, which means getting mildly sick, by 36 percent after one dose and 88 percent after two doses. There is, however, no available data about asymptomatic or mild infections with the Delta variant in fully vaccinated people, which means that people can get infected but not show any symptoms. Also, we know that people with underlying medical conditions have died from COVID-19, even after being fully vaccinated. As a result, the Delta variant creates a major concern if there are fully vaccinated people who are in close contact with family or household members or with people who are immunocompromised or have not been vaccinated, including children.

What about those who are not vaccinated?

If you have not been vaccinated yet, you should seriously consider doing so now. People who have not been vaccinated have a much greater risk of getting seriously ill or dying from COVID-19, especially the Delta variant. Meanwhile, people who are not vaccinated, or who are immunocompromised, should continue to use masks, socially distance to avoid infection especially if you don’t know the status of the individuals around you. If you’re unsure of getting vaccinated, I would encourage you to have discussions with medical professionals who may provide reliable information about the benefits of vaccination. Currently, 44 percent of New York City residents of all ages have not been vaccinated and 34 percent of adults have not been vaccinated in New York City. The distribution of people getting vaccinated is not even. Check out the New York City Department of Health website for the latest information about vaccine availability and vaccination rates.

Why are vaccines important?

The COVID 19 pandemic is a global problem. While vaccines are becoming readily available in the United States, the majority of the world remains unvaccinated. And the pandemic will persist for months, and likely years. Vaccination is our primary means of ending the pandemic. Vaccines are safe and effective. Please consider getting vaccinated, if you are eligible.

Visit our website for COVID-19 vaccination information, appointments and resources

Mount Sinai Creates COVID-19 Vaccine for Low- and Middle-lncome Countries

Updated on Jun 30, 2022 | Featured, Research, School

An effective COVID-19 vaccine developed by scientists, from left, Florian Krammer, PhD; Adolfo García-Sastre, PhD; and Peter Palese, PhD, could help ease the shortage of vaccines available to low-and-middle-income countries.

The development of a safe, effective, and inexpensive COVID-19 vaccine that can easily be produced and distributed in low- and middle-income countries is underway at the Icahn School of Medicine at Mount Sinai, where early phase 1 clinical testing in Vietnam and Thailand has shown positive results.

The vaccine is the brainchild of three renowned scientists at Mount Sinai—Peter Palese, PhD, Horace W. Goldsmith Professor and Chair of the Department of Microbiology; Adolfo García-Sastre, PhD, Irene and Dr. Arthur M. Fishberg Professor of Medicine and Director of the Global Health and Emerging Pathogens Institute; and Florian Krammer, PhD, Mount Sinai Professor in Vaccinology. By combining their expertise, the scientists—who previously developed a universal influenza vaccine—hope to bring closure to this deadly pandemic by providing less affluent countries with an accessible and cost-effective COVID-19 vaccine they can manufacture themselves.

To date, the World Health Organization has distributed only 90 million vaccine doses to 131 countries, far short of the number needed to stop the spread of SARS-CoV-2, the virus that leads to COVID-19. More contagious variants of the virus will continue to evolve and plague countries around the world as long as their populations remain unvaccinated. “When we protect other countries we protect ourselves, as well,” says Dr. Palese.

Dr. Krammer says, “In North America and Europe many people are getting vaccinated and the virus circulation is going down. But that is not the case in countries in Asia or Latin America, for example. Their COVID-19 case numbers are going up quickly. They need a vaccine and they don’t have access.”

Anticipating this need, Dr. Palese and his colleagues designed Mount Sinai’s COVID-19 vaccine to use the avian Newcastle virus (NDV), and constructed it similarly to an influenza virus vaccine, which can be manufactured in embryonated or fertilized chicken eggs.

Mount Sinai’s COVID-19 vaccine, which would require two doses, could be made using the same influenza vaccine production facilities that many countries already have in place.

The NDV-based vaccine is engineered to express the spike protein of SARS-CoV-2. The construct is injected into an embryonated egg, the virus replicates, and the amplified vaccine virus is then collected, purified, and inactivated. According to Dr. Palese, the resulting vaccine is stable, extraordinarily immunogenic, and induces highly protective immune responses against SARS-CoV-2. Immunogenicity is a measure of the type of immune responses that a vaccine generates and their magnitude over time.

“The beauty of this vaccine is that it can be made using the same influenza vaccine production facilities that many countries already have” in place, Dr. Krammer says. Approximately three billion doses of flu vaccine are produced each year using embryonated eggs.

There are other advantages, as well. Mount Sinai’s Newcastle vector vaccine does not appear to cause any side effects, such as the low-grade fevers, headaches, or pain and swelling at the injection site that are associated with the Moderna and Pfizer-BioNTech mRNA vaccines. The vaccine can also be stored at the same temperature as a home refrigerator, whereas both mRNA vaccines require extra-cold temperatures found only in commercial-grade freezers.

Mount Sinai’s vaccine, says Dr. Palese, can “probably be produced for under one dollar per dose,” and will require two doses spread over 21 days. By comparison, the mRNA vaccines, which also require two doses spread over three to four weeks, cost roughly $50 per dose. To keep costs down, Mount Sinai has agreed to grant licenses for its intellectual property to low- and middle-income countries that produce the vaccine and forgo any royalties on its use.

Dr. Garcia-Sastre says, “Prior to COVID-19, we realized the potential of NDV-based vaccines and for several years optimized this vaccine vector to achieve optimal immunogenicity of the delivered antigen (or toxin). NDV-based vaccines not only have the potential to stop COVID-19 in countries that have no access to the existing SARS-CoV-2 vaccines, but could be easily tailored to stop future pandemics caused by novel pathogens.”

As phase 2 testing for the vaccine ramps up in Thailand and Vietnam, accelerated phase 1 trials are ongoing in Mexico and Brazil. The trial designs used in these countries should lead to rapid phase 3 results. So far, the scientists say they have been pleased with their phase 1 results and with the tests that have been conducted in animal models.

“You can say that in animals, the vaccine protects beautifully,” says Dr. Krammer. “There is preliminary immunogenicity data that suggests the vaccine induces very good neutralizing titers.”

It is not yet clear whether the current vaccine will need to be updated to protect against aggressive new variants, according to Dr. Krammer. “But if it’s needed, we can change and move quickly to a variant vaccine. It would not be complicated.”

With regard to safety, which is top priority in a phase 1 trial, Dr. Palese says, “We are passing with flying colors.”

Can the COVID-19 Vaccines Affect My Fertility?

Updated on Jun 30, 2022 | COVID-19, Featured, Men's Health, Vaccines, Women's Health, Your Health

Worried young woman holding pregnancy test

Some men and women may be reluctant to get the COVID-19 vaccination because of concerns about fertility. You may be wondering if any of the vaccines used in the United States can have an effect on your sperm count, or on your eggs, embryo, or the pregnancy itself.

In this Q&A, Alan Copperman, MD, Director of the Division of Reproductive Endocrinology and Infertility and Vice Chair of the Department of Obstetrics, Gynecology, and Reproductive Science at the Mount Sinai Health System, says the evidence shows that the vaccines do not pose a concern.

Update: The Centers for Disease Control and Prevention on September 29, 2021, strongly recommended COVID-19 vaccination either before or during pregnancy because the benefits of vaccination outweigh known or potential risks. Read more from the CDC

Does the COVID-19 vaccine affect my sperm count?

None of the COVID-19 vaccines in use in the United States affect sperm count or the sperm’s ability to move toward an egg (motility). It is true that contracting a severe case of COVID-19 can lower sperm count for a time. But studies show that the vaccine itself does not affect sperm. In fact, we recently completed a study looking at sperm donors around the country before and after getting the vaccine. We saw no change in count or motility.

Can the vaccine affect my ability to get pregnant and have a baby?

We have found that the COVID-19 vaccinations do not affect a woman’s fertility. Pregnancy involves a number of steps:

Your ovaries release an egg.
The egg travels through the fallopian tube to the womb (uterus).
Sperm fertilizes the egg as it travels.
The fertilized egg attaches to the inside of the uterus (implantation) and grows.

A problem at any one of these steps can lead to infertility. We’ve been studying women who have gone through several fertility cycles to see if any of the COVID-19 vaccines used in the United States affects any of these steps. We have found that:

The vaccine does not decrease egg production.
It doesn’t affect the ability to make an embryo.
It doesn’t affect a chromosomally normal embryo’s ability to grow in the uterus.

Will the COVID-19 vaccine have any effect on my pregnancy?

This is a good question because we’ve found that pregnant women who get COVID-19 tend to become very ill. That’s why we recommend taking the vaccine. As of now, three billion COVID-19 vaccinations have been administered, have of them to women, and we haven’t heard any reports of them affecting a woman’s pregnancy. We have also seen women getting the vaccine while undergoing in vitro fertilization—and it has had no effect on their outcomes. In fact, we have found that the vaccine not only protects the pregnant woman, but it keeps them safe at vulnerable times, such as when they deliver—and the fetus gets some immunity as well. We hypothesize that the vaccine prevents severe illness in these babies.

Should I get the COVID-19 vaccine if I’m planning a pregnancy in the near future?

The best time to get the vaccine is as soon as it becomes available to you. You may feel tired after the shot, and you may have short-term symptoms like fever. Some people have an allergic reaction to the vaccine, but that is very rare. We definitely recommend getting the COVID-19 vaccine to protect you, your pregnancy, and your infant.

If I’m already pregnant should I get the vaccine?

Safety data from around the world shows that women taking the vaccine during pregnancy have seen no effect on their pregnancy. The vaccine has shown itself to be safe and effective. As a result, all the major organizations involved with women’s health care—including the Society for Maternal-Fetal Medicine and the Centers for Disease Control and Prevention—are strongly advocating that people who are pregnant get the vaccine.

Which vaccine is best for a pregnant woman?

There’s no data suggesting that any one of the vaccines is better than any of the others for pregnant women. We know that the effectiveness against preventing disease seems a little bit higher in the mRNA vaccines (Pfizer-BioNTech and Moderna), but all the vaccines that have been authorized by the Food and Drug Administration (FDA) are up to 99 percent effective in preventing severe disease and death. Get whatever vaccine is most readily available to you.

What should I do if I have questions about the vaccine and my fertility?

If you have any questions, ask your health care provider. You can also check the online guidelines from organizations like the World Health Organization and the FDA. There is a lot of great information out there to help us fight back against this pandemic.

Get more COVID-19 vaccine information from Mount Sinai

A Major Breakthrough and Potential New Treatment for Children With an Inflammatory Blood Disease

Updated on Jun 30, 2022 | Featured, Research

Miriam Merad, MD, PhD

A 17-year quest to understand Langerhans-cell histiocytosis (LCH)—an inflammatory blood disease that mostly affects children and can result in dementia and death—has led researchers at the Icahn School of Medicine at Mount Sinai and their colleagues in Texas to a transformational discovery and a potential new treatment. Their findings were published in May in Nature Medicine.

The team, led by Miriam Merad, MD, PhD, Director of the Precision Immunology Institute at Icahn Mount Sinai, and Carl E. Allen, MD, PhD, Professor of Pediatrics, Hematology-Oncology, at Baylor College of Medicine, found that individuals with LCH have a mutation that puts a subset of white blood cells into a state called senescence. In this state, the cells stop multiplying as they normally would, express a pro-survival gene, and begin producing inflammatory molecules.

Lesions, a hallmark of the disease, form wherever the inflammation occurs, on the skin and in various organs including the brain and central nervous system, manifesting differently in each patient and causing a range of severity. Roughly one in 100,000 children in the United States develops LCH each year, putting it on par with the incidence of pediatric Hodgkin lymphoma, the third most common cancer in children. LCH appears to be most prevalent in the Middle East and countries such as China.

Understanding the role senescence plays in LCH has enabled the researchers to find a potential treatment that “attacks the cause of the problem,” says Dr. Merad. “We have a therapeutic molecule that can get at this pathway and block the ability of these senescent cells to survive.” When the researchers tested the molecule in animal models and on human cells they found the diseased cells were “super-addicted to this survival signal. So now we have a way of blocking the survival signal.”

Plans are underway, she adds, to launch an international, multi-site clinical trial in September, in conjunction with a pharmaceutical sponsor and the National Institutes of Health. Details will be released when the contracts are formalized.

If successful, Dr. Merad says the therapeutic molecule would replace the use of chemotherapy, the current standard of care, which fails to work in the majority of cases. Chemotherapy helps to eliminate some of the inflammation, she says, but it also kills healthy cells and is unable to reach the diseased cells.

Even with the latest breakthrough, LCH remains a baffling disease. It is not inherited, and there appears to be only one mutation. “It’s very unique,” says Dr. Merad. “We don’t know the cause or what makes some kids more at risk.” Upcoming clinical trials should help shed more light on the disease mechanisms.

Drs. Merad and Allen have been collaborating on LCH research since 2004, when they met at a conference in Greece, which was sponsored by the father of a child with a severe case of LCH, who was frustrated by the lack of scientific knowledge. Five years later, Drs. Merad and Allen were the first to describe LCH as a disease of the hematic system—blood vessels that carry blood throughout the body—which originates in the bone marrow. Prior to that, LCH was categorized as a type of skin cancer.

“This disease should be classified as an inflammatory hematological disease,” says Dr. Merad. “There’s no proliferation; the cell never metastasizes. What we’ve discovered in this latest paper is that the mutation puts the cells into a state that is not cancerous, but one in which the cells are fighting not to expand. They start producing a lot of inflammatory molecules because they sense there is danger. This inflammation is the cause of most of the symptoms.”

She says the next piece of the LCH puzzle will be figuring out how to prevent the disease from causing neurodegenerative damage.

The 17-year journey to reach this latest discovery has been a “story of friendship, commitment, and perseverance,” says Dr. Merad. It was her mentor, the late Nobel laureate Ralph M. Steinman, MD, who first asked her to join him in studying LCH and brought her to the 2004 conference where she met Dr. Allen. She became committed to understanding the baffling disease after being greeted at the door by the organizer’s teenage son, who had LCH, and by his father, who had enlisted some of the world’s leading scientists to find answers.

“What’s beautiful is that this group we formed in 2004 (with Dr. Allen’s lab) is as strong today as it was then,” says Dr. Merad. “We never stopped working on these questions. Science takes perseverance. We start with the question, and we dig and dig until we have something solid and then we put it out there. No matter what it takes we continue to work on it.”

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