Purple Day: Raising Awareness, Ending Stigma of Epilepsy

Every year on March 26, people and organizations around the world band together in solidarity for Purple Day. They wear purple and host events to raise awareness about epilepsy, with the goal of ending its stigma. For Purple Day this year, we got together experts from the Mount Sinai Health System to explain what epilepsy is and answer other top questions people might have.

Is epilepsy contagious?
“You cannot spread epilepsy from one person to the other,” says pediatric neurologist Natasha Acosta Diaz, MD, Assistant Professor of Neurology at the Icahn School of Medicine at Mount Sinai.

Epilepsy is not an infection. It is a neurological condition characterized by seizures caused by abnormal brain electrical activity, says Dr. Acosta Diaz.

Is epilepsy electroencephalogram (EEG) testing painful?
In a standard EEG test, electrodes—small metal discs—are attached to the scalp with the help of a glue. The EEG test is not painful, says Anuradha Singh, MD, Director of the Epilepsy Monitoring Unit, and Professor of Neurology at Icahn Mount Sinai.

EEG tests study brain rhythms to look for any sign of irritability.  A standard EEG test records these brain rhythms for 20 minutes to an hour, says Dr. Singh. “Sometimes you get a little glue left on your scalp but it’s not painful at all,” she adds.

Is epilepsy surgery dangerous?
“The myths about the danger of epilepsy surgery come from the past, from about the last 100 years or so,” says neurosurgeon Fedor Panov, MD, Director of the Adult Epilepsy Surgery Program and Associate Professor of Neurosurgery at Icahn Mount Sinai. “What you currently find on the internet (about the dangers) unfortunately is not appropriate and it just perpetuates this myth that epilepsy surgery is dangerous,” he notes.

Epilepsy surgery has its risks and benefits. “Most certainly, the benefits outweigh the risks,” says Dr. Panov. As the epilepsy care team might phrase it to patients, the risk of going through a year with epileptic seizures far outweighs the risk of a surgical intervention to cure the epilepsy, he says.

Can epilepsy seizures be triggered by flashing lights?
There is a type of epilepsy that can be triggered by flashing lights, called photosensitive epilepsy. “However, this is very rare,” says Dr. Acosta Diaz.

When testing a patient for epilepsy, flashing lights are used to see if they provoke a seizure, and if so, appropriate recommendations for care can be given, she adds.

Can people with epilepsy drive a car?
“You can drive a car if you’re seizure-free,” says Dr. Singh. However, different states can have different rules and regulations. People with epilepsy will have to check with their state’s Department of Motor Vehicles, she notes.

What are some epilepsy surgical options?

Vagal nerve stimulator
Involves placing a small wire around a nerve in the neck to decrease seizure activity. The wire is attached to a small battery inserted under the skin of the chest.

Stereotactic laser ablation
Uses lasers to remove a part of the temporal lobe of the brain to help control seizures. The procedure is guided by magnetic resonance imaging (MRI), allowing for very precise cuts and removal.

Staged craniotomy
A two-stage surgery that involves removal of part of the skull to expose the brain, followed by removal of the brain tissue that is causing the seizures. Removing the damaged part of the brain does not cause deficits, as other parts of the brain adapt and pick up function. The procedure improves the overall brain network because it allows the healthy areas to work without constant electrical interference from the seizure “hot spot.”

Responsive neurostimulation
A device is implanted that automatically records and detects electrographic seizures, then rapidly delivers electrical stimulation to suppress seizure activity. It is the first device that the U.S. Food and Drug Administration has approved for use in the brain to listen, learn, and respond to seizures.

Can people with epilepsy have a job?
“Absolutely,” says Dr. Panov. “It’s a myth to say you cannot work if you have seizures.” Epilepsy care teams are available to help patients be a part of their community, including having and holding jobs. The Americans with Disabilities Act prohibits discrimination against people with disabilities in several areas, including employment.

While it is not mandatory that people with epilepsy disclose their condition to employers or coworkers, it is recommended that someone at the workplace is aware, says Dr. Acosta Diaz. “Just in case you have a seizure, somebody can be with you or help you,” she says.

Can people with epilepsy have children?
People with epilepsy can have happy, healthy children, says Dr. Singh. Women with epilepsy should work with their OB/GYN and epileptologist to ensure they’re on the safest drugs for the pregnancy, says Dr. Singh.

Can people with epilepsy stop taking medications when seizures stop?
The goal of any Comprehensive Epilepsy Center is to get patients seizure-free, and ultimately off the medications, says Dr. Panov: “The idea is that you will come off your meds once the seizures stop.”

It is important, however, that patients do not stop taking medications without discussing with their specialists, says Dr. Singh. A lot of factors go into the consideration of stopping medications, including EEG results and MRI scans, so that process should be done in consultation with an epileptologist.

Can people with epilepsy swallow their tongue?
“No way, there’s no way that you’re going to swallow your tongue,” says Dr. Acosta Diaz. During a seizure, the tongue can go to the side of the mouth and people can accidentally bite their tongue. To assist someone with a seizure, be calm and lay the person on the side, and definitely do not put anything in the mouth, such as a spoon, she says.

Does a ketogenic diet help people with epilepsy?
It does, in certain cases, says Dr. Singh. A ketogenic diet is a high-fat, adequate-protein, and low-carbohydrate diet. It is more often used in pediatric epilepsy, especially for children in whom medications do not work well, says Dr. Acosta Diaz.

Ketosis, a state where the body derives its sources of energy from fat rather than glucose, is known to have anticonvulsant properties. However, it’s not easy for a person to enter into ketosis. That is why an epilepsy care team involves overseeing a patient’s metabolism and nutrition as well, notes Dr. Acosta Diaz. “It’s not something you can try by yourself at home. It’s not just doing a keto diet to lose weight,” she says.

Caring for people with epilepsy is a team effort. At the Mount Sinai Epilepsy Center, staff members across all levels of care work together to provide exceptional care. Here’s the Center at a glance:

100+ team members

• Adult epileptologists  • Pediatric epileptologists  • Neurosurgeons  • Neuropsychiatrists  • Neuroradiologists  • Nurse practitioners  • Neurosurgery  • NPs and PAs  • Researchers  • Registered nurses  • Social workers  • Dietitians  • Recreational therapists  • EEG technicians  • Administrative staff

 

 

Designated as a Level 4 medical facility by the National Association of Epilepsy Centers (NAEC), which is the highest recognition of care and expertise for people with epilepsy

Three inpatient Level 4 epilepsy centers at The Mount Sinai Hospital, Mount Sinai Kravis Children’s Hospital, and Mount Sinai West, and six outpatient locations in New York City and Long Island.

ABRET-certified labs

Five Mount Sinai sites have received American Board of Registration of Electroencephalographic and Evoked Potential Technologists (ABRET) Lab accreditation for achieving highest levels of quality and competence performing neurodiagnostic tests.

In 2023

The Mount Sinai Health System performed more than 13,000 electroencephalograms and completed 100 surgeries to reduce or eliminate seizures for adult and pediatric patients.

In addition to treating patients with epilepsy, the Mount Sinai Health System and Icahn Mount Sinai conduct research to push the frontiers of understanding the neurological conditions and what is possible with treatment. Here are some examples of what Mount Sinai is doing to further science in epilepsy.

Clinical trial: Epilepsy associated with Lennox-Gastaut syndrome

Lennox-Gastaut syndrome (LGS) is a severe form of epilepsy, with seizures beginning in early childhood. To treat seizures that have not been well controlled through conventional medication, researchers are using novel responsive neurostimulation (RNS) strategies. This is the first clinical trial using RNS for LGS.

The trial is supported by a five-year grant from the National Institutes of Health, and conducted in collaboration with five other centers in the United States.

Click here for more info.

Clinical trial: Efficacy of subanesthetic doses of IV ketamine for treatment-resistant epilepsy

Ketamine is an anesthetic that provides pain relief, and came into clinical use in the 1960s. In a hospital setting, ketamine is used intravenously at anesthetic doses to treat unrelenting seizures known as status epilepticus in comatose patients. Mount Sinai researchers are exploring using ketamine at subanesthetic doses in an outpatient setting for patients who have treatment-resistant epilepsy. With subanesthestic dose-ketamine recently approved by the FDA for treatment-resistant depression, researchers are optimistic about its safety, and are hopeful that this will provide relief for patients with hard-to-treat epilepsy as well.

Click here for more info.

Clinical trial: Phase 3 trial for a once-daily, oral treatment for those living with focal seizures (XTOLE2)

Focal seizures are when brain cells on one side of the brain malfunction, causing symptoms, and are considered the most common type—making up more than half of all seizures. Symptoms could include one or more of the following: motor, sensory, autonomic, or cognitive. While treatment can stop or reduce the frequency of the seizures, for some patients, current treatment options may be insufficient. Mount Sinai is participating in a Phase 3 study with Xenon Pharmaceuticals to explore the use of XEN1101, a potassium channel opener, along with the patient’s existing medication, for focal seizures. Clinical data from previous trials have shown up to around 50 percent reduction in focal seizures among participants who have received the drug.

Click here for more info.

Clinical trial: Phase 3 trial for Staccato® Alprazolam in participants 12 years and older with stereotypical prolonged seizures

Benzodiazepines are more commonly known for treating anxiety or panic disorders, but they can also be used to terminate most seizures in an inpatient setting. Approved therapies include a rectally-administered gel and intranasal formulations. However, there are no approved treatments for rapidly terminating an ongoing seizure in an outpatient setting. Mount Sinai is participating in a Phase 3 trial with pharmaceutical company UCB to study the effectiveness and safety of Staccato® Alprazolam, a breath-triggered device that delivers the benzodiazepine deep into the lung for rapid absorption and systemic exposure, with the goal of achieving rapid epileptic seizure termination (REST). In a previous clinical trial, in an inpatient setting, nearly 66 percent of participants who received the drug responded to the treatment, compared to 43 percent of participants who received a placebo. For participants who responded to the intervention, the Staccato® Alprazolam group saw seizure cessation in a median time of 30 seconds, compared to 60 seconds for those who had received a placebo. The Phase 3 trial tests the treatment in an outpatient setting.

Click here for more info.

Clinical trial: Electrographic seizure pattern modulation biomarkers in responsive neurostimulation for epilepsy

Although the therapeutic benefit of RNS is well established, predicting how well and when a patient might respond to the device is difficult. It may take several months for a patient to report a reliable change in seizure status, during which time the programming clinician has no objective guidance regarding whether or not to adjust settings. RNS devices can provide EEG recordings, offering an insight to seizure patterns, but there is little knowledge about how to use these recordings in individual patients. Thus, a critical need exists to develop methods for using a patient’s own data to predict when seizure reduction should be expected or to confirm objectively the presence and maintenance of a clinical response.

Icahn Mount Sinai researchers are working with Massachusetts General Hospital to apply machine learning, neurostatistics, and data science to improve the effectiveness of RNS, especially for children and adults who are not considered suitable surgical candidates.

Click here for more info.

Laboratory for Human Neurophysiology

The Laboratory for Human Neurophysiology seeks to understand how human cognition arises from the interaction of multiple brain areas and neurotransmitter systems, particularly in decision-making behavior. These research efforts involve studying prefrontal cortical and subcortical areas directly in the human brain by conducting intracranial electrophysiology recordings in patients undergoing neurosurgical treatment.

Ongoing research projects in the laboratory include investigating the neural basis of human decision-making under uncertainty using distributed intracranial EEG recordings in epilepsy patients, decoding overt subject behavior from preceding, distributed brain activity in reward-related brain regions, and studying reward and mood processing across multiple brain areas in epilepsy patients with and without comorbid depression. The lab is led by Ignacio Saez, PhD, Associate Professor of Neuroscience, Neurosurgery, and Neurology at Icahn Mount Sinai.

Click here to read more about the lab.

Match Day 2024: Entering Specialties With Great Need

Fourth-year MD Icahn School of Medicine students receiving their placements on Match Day, Friday, March 15, from left to right: Amina Avril, Claire Ufongene, Candida Damian, Yhan Colón Ibán, and Charlotte Pierce.

Match Day represents a milestone for fourth-year medical students across the country—it’s when they receive their placements for the residency programs they’ve applied to. On Friday, March 15, the Icahn School of Medicine at Mount Sinai’s Class of 2024 congregated at the Guggenheim Pavilion for Match Day, and 133 students matched to 26 different specialties across the nation.

Michael Leitman, MD, Professor of Surgery, and Medical Education, at Icahn Mount Sinai, and Dean for Graduate Medical Education, observes Match Day closely because it reflects the physician pipeline. In several critical areas, he says, most notably the primary care specialties (internal medicine, general pediatrics, family medicine, and geriatrics) and psychiatry, the supply of new doctors entering these specialties is barely sufficient to meet demand.

“These are areas where we are seeing low match rates among students, and we suspect that students are gravitating towards careers in more lucrative specialties in part because they’re concerned about debt,” says Dr. Leitman.

According to the National Resident Matching Program, the organization conducting the Main Residency Match, for the Class of 2024 MD seniors, 87.8 percent of family medicine residency positions were filled, compared to most other programs, which were filled 100 percent—or close to. Pediatrics and psychiatry programs had unfilled positions in this year’s match too.

A 2021 report from the Association of American Medical Colleges (AAMC) forecasts a primary care physician shortage of 18,000 to 48,000 in 2034. The big problem this shortage creates is that primary care is where important screenings are done, such as hypertension.

Positions filled in specialties with high need: 2024 vs 2023

Specialty 2024 2023
Family Medicine 87.8% 88.7%
Pediatrics 91.8% 97.1%
Psychiatry 99.5% 99.0%

“In the areas that we serve at The Mount Sinai Hospital, which includes East Harlem, we have to think about the loss of family medicine doctors who will not be available to care for this population, which will only further reinforce the health care disparities we are working so hard to correct,” says Dr. Leitman.

“Although historically, students from Icahn Mount Sinai have matched to primary care fields at lower rates than other specialties, this year’s Match represented the highest number of students matching into primary care specialties,” says Tara K Cunningham, EdD, MS, Senior Associate Dean for Student Affairs and Associate Professor of Medical Education, who leads the team responsible for career and residency advising at Icahn Mount Sinai. Last year, Dr. Cunningham says, two students entered pediatrics. “This year, a record-breaking 11 students are going into pediatrics.”

Icahn Mount Sinai’s Class of 2024 has more students placing into primary care and neurology than any other graduating class in school history. The most popular specialties for the class are internal medicine (28), pediatrics (11), anesthesiology (10), obstetrics (8), gynecology (8), neurology (7), ophthalmology (7), and psychiatry (7).

Two MD seniors entering residency programs in specialties with high need share their thoughts on their matches and what they hope to achieve in their respective fields.

Stephanie Ureña, Family Medicine program at NewYork-Presbyterian/Columbia University Irving Medical Center

What are your thoughts on your match, and tell me about the programs you applied for?

I am very happy with my result because this was my top choice. I wanted to stay in New York City and work with an underserved, majority-Hispanic population. I mostly applied to programs in New York City and Philadelphia because these are both places where I had a community. I was born and raised in the Bronx and this is where most of my immediate family is. I went to school at the University of Pennsylvania so I also had some friends there and some family that had also moved there.

What do you know about the challenges of the specialty you’re entering, and how do you think you might be able to overcome them?

I am going into family medicine and given the current medical system, there is never enough time for visits. Additionally, patients’ health is connected to social determinants of health and there are often not enough resources to keep patients healthy.

I plan on learning to prioritize pressing health issues for quick visits given the time crunch. I also plan on immersing myself into the community that I practice in so that I can learn about community resources that address some of their social determinants of health.

What inspired you to go into medicine in the first place?

I had a really awesome pediatrician growing up who was my constant cheerleader. I remember looking forward to his visits because he just wanted to catch up on life and would always teach me ways to stay healthy. Then as I grew up, I realized how much I liked science and was fascinated by the human body so I decided to continue to pursue a path in medicine.

What impact do you hope to achieve in your specialty?

For family medicine, I hope to continue to provide patient-centered health care and expand on my knowledge of community resources. I would ideally like to have a system in which I refer my patients to community resources that address their social determinants of health. I would also like to create more pipeline programs that bring students from the local community into medical schools that are in their community. I envision myself joining a community board and advocating for the community needs.

Candida Damian, Pediatrics/Psychiatry/Child Psychiatry Triple Board program at Brown University/Rhode Island Hospital

What are your thoughts on your match, and tell me about the programs you applied for?

I am very excited. There are only 11 Triple Board programs in the country, so I am super grateful to have matched. Since there are limited triple board positions, I applied for categorical psychiatry positions as well. I wanted to match into a Triple Board program because I am deeply passionate about the intersection of pediatrics and psychiatry, and am drawn to the diversity of experiences and the unique skill set that Triple Board training offers.

What do you know about the challenges of the specialty you’re entering, and how do you think you might be able to overcome them?

Entering a Triple Board program presents the challenge of navigating multiple specialties and wearing different hats, requiring adaptability and flexibility. I plan to overcome this by really leaning into my training and always asking for help.

There is a huge need, especially, for child psychiatrists. Mental health in children is a public health crisis. Entering a field with a high, under-met need is both daunting and inspiring. It underscores the urgency and importance of my chosen path. I see it as an opportunity to make a meaningful impact on individuals and communities who are underserved and often marginalized. By entering these fields, I aim to contribute to closing the gap in access to quality health care and improving outcomes for those in need.

What inspired you to go into medicine in the first place?

It has been my childhood dream to become a doctor. However, due to many external factors, I had believed a profession in medicine was just too far out of my reach. The idea of attending college was daunting enough, not to speak of attending medical school. I was committed to providing compassionate care for patients, so I channeled my energy into going to nursing school.

I will never forget the day as a third-year nursing student that I met a 16-year-old patient who confided in me about the events that led up to her being admitted into the psychiatric hospital. She had dreams of going to college and becoming a marine biologist. However, the external hardships she faced made her doubtful that she could accomplish her goals. She told me, “You know more about me than the doctors here do. I feel like I can tell you anything.”

We could relate to each other, we had similar upbringings, and I learned that just my presence alone was able to give patients that feeling of safety they often lacked. I recognized that all of the reasons that led me to believe I could not become a physician were actually the reasons why I needed to become a physician.

That patient’s story and trust in me during my nursing rotation helped me believe, for the first time, that becoming a physician was attainable. My determination to make a difference outweighed the fear. That day, I Googled “How to get into medical school” and the rest was history.

What impact do you hope to achieve in your specialty?

In my specialty,

2024 Jacobi Medallion Award Ceremony

Seated, from left: Helen M. Fernandez, MD, MPH, MSH ’01; Marla C. Dubinsky, MD; Emma Guttman-Yassky, MD, PhD; Roxana Mehran, MD, MSH ’95; and Stephen Harvey, CPA, MBA. Standing, from left: Dennis Charney, MD, Anne and Joel Ehrenkranz Dean, Icahn School of Medicine at Mount Sinai; Stuart A. Aaronson, MD; Peak Woo, MD; Mark Kostegan, FAHP; Kirk N. Campbell, MD; Sandra K. Masur, PhD, FASCB; Brendan G. Carr, MD, MA, MS, Chief Executive Officer of the Mount Sinai Health System; and Leo M. Keegan, MD, MSSM ’86, MSH ’94. Not pictured: Jeremy H. Boal, MD, MSH ’96

The Mount Sinai Alumni Association and Icahn School of Medicine at Mount Sinai presented accomplished physicians, researchers, educators, and administrators with the 2024 Jacobi Medallion, one of Mount Sinai’s highest awards. The annual ceremony was held Thursday, March 14, at the Plaza Hotel.

The recipients of the Jacobi Medallion have made exceptional contributions to the Mount Sinai Health System, Icahn Mount Sinai, the Mount Sinai Alumni Association, or the fields of medicine or biomedicine.

Watch the ceremony

View the digital program

Watch the In Memoriam video

Stuart A. Aaronson, MD

Founding Chair Emeritus, Department of Oncological Sciences

Jane B. and Jack R. Aron Professor of Neoplastic Diseases, Icahn School of Medicine at Mount Sinai

Associate Director for Basic and Translational Research, The Tisch Cancer Institute’s NCI-designated Cancer Center

Watch a video of Dr. Aaronson

Jeremy H. Boal, MD, MSH ’96

Executive Vice President and Chief Clinical Officer, Mount Sinai Health System, and President of Mount Sinai Beth Israel and Downtown until December 2023

Department of Population Health Science and Policy

Watch a video of Dr. Boal

Kirk N. Campbell, MD

Irene and Dr. Arthur M. Fishberg Professor of Medicine in the Division of Nephrology

Professor of Pharmacological Sciences

Founding Director of the Center for Kidney Disease Innovation

Icahn School of Medicine at Mount Sinai

Watch a video of Dr. Campbell

Marla C. Dubinsky, MD

Professor of Pediatrics and Medicine, Icahn School of Medicine at Mount Sinai

Chief of Pediatric Gastroenterology and Nutrition, Mount Sinai Kravis Children’s Hospital

Co-Director of the Susan and Leonard Feinstein IBD Clinical Center

Co-Director of the IBD Preconception and Pregnancy Planning Clinic at Mount Sinai

Watch a video of Dr. Dubinsky

Helen M. Fernandez, MD, MPH, MSH ’01

Vice Chair of Education, Brookdale Department of Geriatrics and Palliative Medicine

Icahn School of Medicine at Mount Sinai

Watch a video of Dr. Fernandez

Emma Guttman-Yassky, MD, PhD

Waldman Professor of Dermatology and Immunology

Health System Chair of the Department of Dermatology

Director, Center for Excellence in Eczema and the Laboratory for Inflammatory Skin Diseases

Icahn School of Medicine at Mount Sinai

Watch a video of Dr. Guttman-Yassky

Stephen Harvey, CPA, MBA

Chief Financial Officer, Mount Sinai Health System

Watch a video of Mr. Harvey

Mark Kostegan, FAHP

Chief Development Officer and Senior Vice President for Development at Mount Sinai

Watch a video of Mr. Kostegan

Roxana Mehran, MD, MSH ’95

Professor of Medicine

Director of Interventional Cardiovascular Research and Clinical Trials, Zena and Michael A. Wiener Cardiovascular Institute

Icahn School of Medicine at Mount Sinai

Watch a video of Dr. Mehran

Peak Woo, MD

Clinical Professor, Department of Otolaryngology and Head and Neck Surgery

Icahn School of Medicine at Mount Sinai

Watch a video of Dr. Woo

AI Spotlight: Predicting Risk of Death in Dementia Patients

Kuan-lin Huang, PhD, Assistant Professor of Genetics and Genomic Sciences at the Icahn School of Medicine at Mount Sinai

Dementia is a neurodegenerative disorder, commonly known to affect cognitive function—including memory and reasoning. It is also a factor contributing to death. According to the Centers for Disease Control and Prevention, dementia is currently the seventh leading cause of death in the United States. Alzheimer’s disease is the most common form of dementia, accounting for approximately 70 percent of cases.

Researchers have used artificial intelligence and machine learning to help diagnose and classify dementia. But less effort has been put into understanding mortality among patients with dementia.

A group of researchers at the Icahn School of Medicine at Mount Sinai seeks to tackle this problem by developing a machine learning model to predict risks of death for a patient within 1-, 3-, 5-, and 10-year thresholds of a dementia diagnosis.

“We really want to call attention to how Alzheimer’s disease is actually a major cause of death,” says Kuan-lin Huang, PhD, Assistant Professor of Genetics and Genomic Sciences and Principal Investigator of the Precision Omics Lab at Icahn Mount Sinai.

“When people think of dementia, they think of patients losing their memory, as opposed to when people think about cardiovascular disease or cancer, they think about mortality,” says Dr. Huang. “As someone who has a family member who unfortunately passed away from Alzheimer’s disease, I’ve seen how the late stage of the disease—because you lose certain bodily functions—can become quite lethal.” In late-stage dementia, the disease destroys neurons and other brain cells, which could inhibit swallowing, breathing, or heart rate regulation, or cause deadly associated complications such as urinary tract infections or falls.

In the study, the team focused on this question: Given a person’s age, specific type of dementia, and other factors, what will be the risk the person will end up passing within a certain number of years?

For its model, the team used XGBoost, a machine learning algorithm that utilizes “gradient boosting.” This algorithm is based on the use of many decision trees—“if-this, then-that”-type reasoning. It learns from errors made by previous simple trees and collectively can make strong predictions.

Here’s how the study’s lead authors, Jimmy Zhang and Luo Song in Dr. Huang’s research team, leveraged machine learning to shed light on mortality in dementia.

The study used data from more than 40,000 unique patients from the National Alzheimer’s Coordinating Center, a database spanning about 40 Alzheimer’s disease centers across the United States. The model achieved an area under the receiver operating characteristic curve (AUC-ROC) score of more than 0.82 across the 1-, 3-, 5-, and 10-year thresholds. Compared to an AUC-ROC of 0.5, which amounts to a random guess that correctly predicts 50 percent of the time, the model performed reasonably well in predicting a dementia patient’s mortality, but still has room for improvement. By conducting stratified analyses within each dementia type, the researchers also identified distinct predictors of mortality across eight dementia types.

Findings were published in Communications Medicine on February 28.

In this Q&A, Dr. Huang discusses the team’s research.

What was the motivation for your study?

We wanted to address the challenges in dementia care: namely, to identify patients with dementia at high risk of near-term mortality, and to understand the factors contributing to mortality risk across different types of dementia.

What are the implications?

Clinically, it supports the early identification of high-risk patients, enabling targeted care strategies and personalized care. On a research level, it underscores the value of machine learning in understanding complex diseases like dementia and paves the way for future studies to explore predictive modeling in other aspects of dementia care.

What are the limitations of the study?

While our study includes nationwide data, to make the model more generalizable, it still needs to be adapted to different research and clinical settings.

How might these findings be put to use?

These findings could enhance the care of dementia patients by identifying those at high risk of mortality for more personalized management strategies. On a broader scale, the study’s methodologies and insights could influence future research in predictive modeling for dementia, potentially leading to improved patient outcomes and more efficient health care systems.

What is your plan for following up on this study?

We plan to refine our dementia models by including treatment effects and genetic data, and exploring advanced deep learning techniques for more accurate predictions.


Learn more about how Mount Sinai researchers and clinicians are leveraging machine learning to improve patient lives

AI Spotlight: Mapping Out Links Between Drugs and Birth Defects

AI Spotlight: Guiding Heart Disease Diagnosis Through Transformer Models

How to Safely Observe a Solar Eclipse

Mount Sinai researchers used state-of-the-art imaging to closely examine a patient’s retina after the solar eclipse of August 2017 burned a crescent shape into her eye.

The tricky thing about a partial solar eclipse is that if you look at it directly, you won’t feel any immediate pain. But the sun’s energy can still permanently damage your retina—and your vision.

In this Q&A, Avnish Deobhakta, MD, Associate Professor of Ophthalmology at the New York Eye and Ear Infirmary of Mount Sinai, explains how to safely look at a solar eclipse and the potential harm that can occur if you do not follow basic precautions for viewing this spectacle, which will take place Monday, April 8.

Avnish Deobhakta, MD

Why should I avoid looking at a solar eclipse? What damage can it do to the eye?

The solar eclipse is a very, very dangerous event for your eyes. Light beams from the sky carry a lot of energy that can be transmitted into the retina and damage it. Usually, the sun is very bright and it’s almost impossible to look directly at it without discomfort. But during a solar eclipse, you can look at the sun for a long period of time and be fooled into thinking that it’s safe because it doesn’t hurt. This is because most of the sun’s rays are blocked off by the eclipse. But the sun’s rays that you see during a partial eclipse are the most damaging to the eye. It’s almost like you’re getting a disproportionate helping of the most energetic and damaging rays because all of the other rays are blocked and the ones that make it through are not so bright that they force you to look away.

What can happen if I take a quick peek?

Even a very quick look at a solar eclipse can burn your retina. During the last solar eclipse, in 2017, one of my patients looked at the eclipse and sustained damage to her retina. She thought she was using protective glasses—but they weren’t the right type. She still has a blank section, a visual blind spot, in the center of her visual field. I used groundbreaking technology to take a close look at the damage to her eye. The damage was in the exact shape as the moon—a crescent shape. We were one of the few sites that had that prototype machine and could take that photo. It may not help the patient, but it gave us new information about the damage caused by exposure to the sun’s rays. Other people have been known to have visual distortions in part of their visual field. Even with a total solar eclipse, there will always be a moment when the sun re-emerges, and some of those rays can damage the retina.

Is the damage permanent?

Yes. We cannot fix it. At the New York Eye and Ear Infirmary of Mount Sinai, we have the technology to take an image and see the part of the retina that is damaged, but there is nothing a doctor can do to treat it. The damage doesn’t go away. Even decades later, your vision will still be impaired.

Can I look using a mirror?

No. Mirrors reflect the damaging sun rays. Looking in a mirror is the equivalent of looking directly at the solar eclipse–it’s not safe.

What about special sunglasses? Are those safe?  

It’s fine to use approved sunglasses that have the right filters. However, you have to make absolutely sure that you have those filters, and you need to obtain them from a reputable vendor. If you are not sure of either of those things, then you should not look at the eclipse, and instead look at a projection of the rays. Most of the people I’ve seen whose eyes were damaged by looking at a solar eclipse thought they were wearing the right glasses. And if you think you’re protected, you’re going to look longer, which increases the chances—and the extent—of damage. (Click here to learn more about safe viewing on the JAMA Patient Page created by the Journal of the American Medical Association.)

How about using a camera, like the one on my phone?

Generally speaking, if you look through your phone camera, you’re looking at an image rendered through the camera. You’re not actually looking directly at the sun, which means, theoretically, that it is safe. What worries me is not the phone camera—it’s that when people hold the camera up toward the sun, they might look around it for even just a brief period of time and can end up with a damaged retina. Think about a concert, when people have their phones out and are recording the concert, but they’re also looking around and watching the band on the stage. That’s not safe during a solar eclipse.

Is there a safe way to look at a solar eclipse?

Pinhole cameras are safe. They reflect light off an object and onto a surface such as a cardboard box or a wall. That way you’re not looking at the rays themselves, you’re looking at a projection of what the rays look like. You can watch a pinhole camera image as long as you’d like; you can even watch the entire solar eclipse reproduced on a pinhole camera and it’s perfectly safe. (Click here to get instructions on how to make your own pinhole camera.)

What if I’m outside during a solar eclipse but I don’t look up?

I don’t want anyone to think if they’re just in the presence of a solar eclipse they’re going to go blind. It’s okay to be outside during a solar eclipse, just be very careful. Be very mindful not to look directly at the sun in any way–and certainly not on purpose. The problem is that if you don’t know what’s going on and the sky looks different all of a sudden, your first instinct is to look up at the sun. The first instinct of all humankind is to look up. But that instinct can be dangerous during a solar eclipse.

New Opera on a Gender-Affirmation Pioneer Is Authored by Mount Sinai Neuroradiologist

A new opera, Lili Elbe, tells the story of one of the earliest recipients of gender-affirming surgery in 1930. The opera is a collaboration of Grammy Award-winning composer Tobias Picker and Aryeh Lev Stollman, MD, a neuroradiologist at Mount Sinai, who wrote the story and lyrics. Photos: Edyta Dufaj

“It’s a love story,” says Aryeh Lev Stollman, MD, a neuroradiologist at Mount Sinai, and the librettist for a new opera, Lili Elbe, which tells the story of one of the earliest recipients of gender-affirming surgery, in 1930. The opera, commissioned by the Theater St. Gallen of Switzerland, was named “Best World Premiere of 2023” at the OPER! AWARDS ceremony on January 29 at the Dutch National Opera in Amsterdam.

Lili Elbe focuses on a successful Danish painter who was married to another painter, Gerda Wegener. Though their marriage was eventually annulled by the King of Denmark and Lili’s name and sex were legally changed, they remained in love with each other. Lili’s case drew international attention, and a semi-autographical account of her story was captured in a book, Man Into Woman: An Authentic Record of a Change of Sex. Another book, The Danish Girl, was loosely based on her story and has become an important text in LGBQT+ literature and the basis for a film.

“We based our story on historical sources,” emphasizes Dr. Stollman. “The Danish Girl was highly fictionalized. But Lili Elbe was quite famous in her day, so we relied on her own writings and news accounts from the time.”

The opera Lili Elbe, in addition to being acclaimed for its artistry, is a significant milestone. It stars Lucia Lucas, a baritone, in the first grand opera for and about a person with trans experience. The Grammy Award-winning composer Tobias Picker, who is married to Dr. Stollman, befriended Lucia when he cast her in Don Giovanni in a Tulsa Opera production—the first time a transgender singer had played the leading role in an American opera. Mr. Picker, Dr. Stollman, and Lucia wanted to collaborate on an original project, and the story of Lili Elbe was chosen.

Tobias Picker, left, and Aryeh Lev Stollman, MD, taking a bow after a performance of the new opera at the Theater Saint Gallen in Switzerland. “This resonates with our work as physicians, health care workers, and support staff, because behind our work is love for humanity,” says Dr. Stollman. “We serve people, no matter their physical appearance, their background, or gender identity. And we do it through all types of difficult times and situations.”

“Tobias asked me to write the libretto—or the story and lyrics,” Dr. Stollman says. “But I worked very closely with Lucia as the dramaturg, to gain the insight of her experience and authenticity.” This is the second time Mr. Picker and Dr. Stollman have collaborated. The first was the inspiring opera Awakenings, based on the story of Oliver Sacks, MD, and his efforts to treat patients with sleeping sickness. That opera opened in June 2022 at the Opera Theatre of Saint Louis.

“Like Awakenings, we wanted Lili Elbe to have a mythic undercurrent,” Dr. Stollman says. “In Awakenings, we used the story of Sleeping Beauty. In Lili Elbe, the myth of Orpheus leading his lover, Eurydice, out of the underworld is a motif that reoccurs. I believe that myths have a strong emotional truth. In the myth, Orpheus is saying, ‘Don’t look back, you cannot return to your old life, but you are coming into a new life.’ And our characters are always moving to the future, to a new life, a new realization. And that’s the mythological underpinning.”

Lili Elbe discovers her true nature as a woman when her wife, Gerda, asks her to stand in for a female model who was delayed for a painting session. Gerda is entranced with the beauty of her husband, then called Einar Wegener, and it is she who bestows the name Lili. And as Lili embraces her identity, she says, “When you paint me now, I feel I have always been her.” Lili becomes a muse to Gerda, whose paintings of Lili win acclaim. But Gerda wrestles with how much space to allow Lili in their marriage. At first, she insists that Lili transition back to Einar in the evening. But as Lili makes her true identity known among their circle of friends, Lili wants to experience all the feelings of womanhood, including marriage and motherhood. And even though their marriage is annulled and they become involved with other lovers, their love for each other endures.

Lili becomes engaged to Claude LeJeune, a young man whose passion is creating perfumes from flowers through a delicate process called enfleurage. The symbolism of the flowers living on becomes a motif as Lili dies as a result of complications of one of her surgeries. And the life and story of Lili Elbe still resonate today.

“The opera is more than about love with a transgender person,” Dr. Stollman says. “It’s about love and transcending difficulties. It’s about a tragic heroine’s journey that starts with self-knowledge. And it’s about loss, because Gerda loses Lili. But also because Lili dies in the end, as many tragic heroines do.”

The staging and choreography of the opera are innovative, witty, and symbolic. As Gerda exhibits her paintings of Lili, they are symbolized by actors suspended above the stage, swirling in evocative poses. The prominent German newspaper Die Welt gave it an enthusiastic review, calling it “emotionally gripping, a delicate work of musical theater that unfolds as an Art Nouveau arc, amidst a bright, symbolist stage.” A leading Austrian paper, the Voralberger Zeitung, called it “an emotionally charged masterpiece.”

Dr. Stollman related the theme of love transcending all to the mission of Mount Sinai, which was founded to care for underserved people and is home to the Center for Transgender Medicine and Surgery, a world leader in gender-affirming care. “This resonates with our work as physicians, health care workers, and support staff, because behind our work is love for humanity. We serve people, no matter their physical appearance, their background, or gender identity. And we do it through all types of difficult times and situations.”

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