What Problems Can Epilepsy Cause?

Simply put, epilepsy is a neurological condition characterized by abnormal brain activity. 

Abnormal brain activity commonly results in seizures, episodes of strange behavior and sensations, as well as the occasional loss of consciousness. This can affect a wide variety of mental and physical functions, but for many epileptics, epilepsy is about more than just experiencing seizures. 

Since epilepsy can affect anyone regardless of gender, age or race, that also means it can affect all parts of life. Let’s dive a little deeper into other co-occurring issues someone with epilepsy may face.  

Problems That Epilepsy Can Cause 

Although many might associate epilepsy with seizures alone, the truth is epilepsy can affect a person’s physical safety, mental wellbeing, individuality and even their social life. Although patients with epilepsy are encouraged to live a normal life as much as possible, they can sometimes pose a risk for themselves and others, especially in a periictal phase (a period of active epilepsy).

 Being Prone To Injury

Injury is a common problem in patients with epilepsy. Experiencing seizures at an inopportune time can lead to dangerous situations for epileptics as well as those around them. For example:

    • Car Accidents: When operating machinery or driving a car, a seizure that results in loss of awareness or control could be fatal for the driver, passengers, and anyone else on the road. 
    • Drowning: Those with epilepsy are roughly 15x more likely to drown while swimming and bathing than those without due to the possibility of seizure in the water.
    • Falling: A seizure that occurs at a height could lead to broken bones, a head injury, even death. 
    • Burns: Cooking, tending to a fire, lighting or being in the vicinity of lit candles, are all actions that can pose a higher burn risk for those with epilepsy or seizures. 

According to a 2013 NIH study, soft tissue injuries, fractures, dental injuries, head trauma, traffic accidents, burns and drownings are the most frequently reported seizure-related injuries.

With that said, it is imperative that patients and family members educate themselves on prevention measures in order to keep themselves and those around them safe. 

Sleep-Related Issues

Sleep is necessary for safety, quality of life, and both physical and mental health. Although most people are well-aware of the value that sleep offers and its significance for overall health and wellbeing, many don’t make it a priority.  

Since sleep and epilepsy are inextricably linked, sleep deprivation is a common trigger of seizures. The frequency, timing, and duration of seizures can all be influenced by sleep, and in turn epilepsy can impair your ability to sleep and exacerbate existing sleep disorders. Individuals suffering from benign rolandic epilepsy and autosomal dominant nocturnal frontal lobe epilepsy have seizures while sleeping. Others, such as epilepsy with generalized tonic clonic seizures, occur within the first 1-2 hours of waking up. Epilepsy medication can also interfere with sleep, they may cause drowsiness and make it difficult to fall or even stay asleep. 

Generally speaking, long-term sleep deprivation can lead to myriad health concerns on its own. This means that on top of seizures, epileptics are also subject to: 

  • depression
  • heart attacks
  • high blood pressure
  • mood disorders
  • obesity and weight gain
  • stroke

If you’re someone with epilepsy and are struggling with sleep deprivation or sleep-related issues, it’s important to reach out to your doctor to see what options may be available to you. 

Side Effects From Medications 

While epilepsy medications can help a person gain control over their seizures, they may also cause their own set of unwanted feelings and physical symptoms. As previously mentioned, some epilepsy medications may interfere with sleep. Some cause drowsiness, while others make it difficult to maintain a solid sleep schedule. In addition to sleep-related issues, epilepsy medications can cause: 

  • feelings of nervousness 
  • hair loss
  • headaches 
  • hypersensitivity to light and noise  
  • nausea 
  • rashes
  • shaking/tremors
  • swollen gums
  • weight gain 

If you have epilepsy and are struggling with side effects from your medication, be sure to discuss options with your doctor and develop a new plan of action together. Your doctor may even be able to reduce your dosage, or prescribe a new medication altogether. 

Brain Damage Caused by Seizures

Fortunately, the majority of seizures do not cause permanent brain damage. That said, a prolonged, uncontrolled seizure can be dangerous. Because of this, it’s important to treat any seizure that lasts longer than five minutes as an emergency and seek medical attention. 

Research indicates that juvenile and adult brains are more vulnerable to damage and rewiring following convulsions than newborn brains, which implies that seizure-induced brain injury is highly reliant upon developmental age.

Prolonged seizures may alter the brain’s structure and cognitive functions. The location of the brain where seizures begin may indicate which function(s) may be affected. Seizures that begin in multiple locations or become generalized can affect a wide range of processes. For example, if seizures occur in the area responsible for language, the person may be unable to name an object when they see it. Even if they know what an object’s name is, the part of their brain that knows cannot tell the rest of their brain. 

Developing Status Epilepticus and Seizure Clusters 

Status epilepticus occurs when a patient experiences frequent and repeating seizures without regaining consciousness in between each seizure, or if they are in a continuous state of seizure activity for longer than five minutes. People suffering from status epilepticus are at a higher risk of permanent brain damage and death. Seizure clusters, on the other hand, are seizures of any type that occur in groups or clusters over a number of hours or days. A person usually recovers between seizures and the clusters end on their own. Seizure clusters may not be an emergency in and of themselves, but a cluster of seizures that becomes longer or more frequent may develop into one.

When a seizure lasts for a long period of time or when seizures occur close together and the person does not recover between seizures, it is considered an emergency. Epileptics who have experienced the following are more likely to experience a seizure emergency in the future: 

  • have been diagnosed with status epilepticus in the past
  • have repeat seizures
  • have poorly controlled seizures
  • have difficulty remembering their medications
  • have started or stopped medicines without medical advice
  • had a generalized seizure lasting five minutes or longer
  • live alone 

It’s important for all epileptics to make sure they have a plan for preventing seizure emergencies and managing their medications. A customized seizure response plan can be developed with the help of a doctor or epileptologist. 

H3: Limitations on Social Life and Independence

Living happily and healthily is a realistic goal for many epileptics. However, life with epilepsy is not without its challenges. Depending on the severity and frequency of someone’s seizures, their social lives and independence can be greatly impacted. 

For epileptics with uncontrolled seizures, some restrictions can include:   

  • limitations around transportation which impacts where a person can live and work  
  • inability to sleep in a room alone due to nocturnal epilepsy and seizures
  • limitations around diets; fitness and nutrition can play a large role in managing epilepsy
  • limitations around family planning (see pregnancy complications below)
  • limitations around employment as seizures may prevent a person from performing certain actions
  • limitations around privacy 

In addition to external limitations, there are also internal limitations that epilepsy can bring on.  People who have epilepsy frequently report memory and thinking difficulties. The ability to perform well at home, at work, and in school may be impacted by these issues, which can in turn affect your mental wellbeing. Since seizures can affect so much of a person’s day-to-day life, some may worry about what their community, family life, and future will look like. It can be difficult to navigate this all while trying to teach your friends, family, and co-workers what epilepsy is, and what they can expect. 

Additionally, receiving an epilepsy diagnosis can be distressing and leave a person feeling alone and isolated. This can lead some epileptics to become anxious, depressed and even develop mood disorders. 

Mental Health Conditions 

Although major depression and dysthymia (a persistent depressive disorder) are the two mood disorders that epilepsy patients experience the most frequently, psychological conditions such  as ADHD, anxiety, anergia, depression, mood disorders, OCD, paroxysmal irritability, psychosis, and suicidal thoughts are all more prevalent in people with epilepsy.

Whether it’s caused by the disorder itself, or it’s a side effect of medication, even those who have well-controlled epilepsy are more vulnerable to psychological complications. This is true even before an epileptic’s first seizure, which shows that a person’s increased susceptibility to depression and other mental health conditions may be caused by the same abnormalities in the brain that make them susceptible to seizures.

If you’re experiencing bouts of depression, anxiety, or any other mental health condition, it’s important to reach out to a doctor for assistance. A physician can help reassess your epilepsy management plan, and may even be able to provide additional treatment options. 

Pregnancy Complications 

Patients with epilepsy have a number of unique concerns during pregnancy. While many will be able to become pregnant and carry healthy children, seizures during pregnancy can endanger both the parent and the child. Seizures during pregnancy can cause decreased oxygen to the fetus, fetal injury, miscarriage due to trauma, slowing of the fetal heart rate, preterm labor and preterm birth. In addition, certain anti-epileptic medications increase the risk of birth defects and even make it more difficult to conceive. 

If you have epilepsy and want to get pregnant, it’s important to discuss options with a doctor beforehand. Throughout your pregnancy, you’ll need to be closely monitored, and your medications may need to be adjusted. Keeping seizures in control during pregnancy will be critical.

SUDEP 

The CDC (Center for Disease Control and Prevention) reports that 1 in every 1,000 people with epilepsy pass away from SUDEP each year. SUDEP refers to the sudden, unexpected death of someone who suffered from epilepsy but was otherwise healthy. Although the exact cause of SUDEP is unknown, recent research suggests that problems with breathing, heart rhythm, and brain function may result in SUDEP-related deaths.

SUDEP is the leading cause of death for those with uncontrolled and frequent tonic-clonic seizures. It is most common in people who have severe epilepsy that isn’t responding to treatment. Although SUDEP can not be prevented in all cases, there are things that can be done to reduce the risk; for example, taking medication regularly and at the correct dosage, avoiding known seizure triggers, getting the proper amount of sleep, utilizing some form of nocturnal supervision, and ensuring that those around you are trained in seizure first aid.

Help End Epilepsy with The Cameron Boyce Foundation

Sharing accurate information and supporting organizations dedicated to ending epilepsy and SUDEP is one of the most effective steps we can take to help cure this life-altering condition. For more information, consider my most recent affiliation: The Cameron Boyce Foundation, which aims to cure epilepsy via research, education, and awareness campaigns in honor of the late Cameron Boyce’s legacy. 

Support the Cameron Boyce Foundation directly by visiting: https://kindest.com/cameron-boyce-foundation

Dana-Farber/Boston Children’s Cancer and Blood Disorders Center Named the Nation’s #1 Pediatric Cancer Program:

In its 2022–23 Best Children’s Hospitals report, U.S. News & World Report ranked the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center as the top pediatric cancer program in the nation for the ninth year in a row. Since the ranking’s establishment, Dana-Farber/Boston Children’s has received more #1 rankings than any other facility, consistently placing as one of the top three pediatric cancer centers in the nation.

With over 200 ongoing clinical trials, 125 stem cell transplants performed each year, and over 150 oncology and hematology specialists on staff,  the Dana-Farber/Boston Children’s Hospital is leading the way in precision medicine for pediatric cancer. Let’s take a closer look at where it all began.  

What Is The Dana-Farber/Boston Children’s Cancer and Blood Disorders Center?

As two internationally recognized research and teaching institutions, the Dana-Farber Cancer Institute and the Boston Children’s Hospital came together in 1947, to provide world-class comprehensive care through The Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. This center is a collaboration that offers an integrated pediatric hematology and oncology program. 

Also known as “Dana-Farber/Boston Children’s,” the center accepts patients from all over the world who need advanced medical care and specialized expertise for the treatment of pediatric cancer or blood disorders. Inpatient care and surgery are typically performed by the clinical staff of the Harvard Medical School affiliates at Boston Children’s Hospital, and outpatient care is typically performed at the Dana-Farber Cancer Institute. 

Over 75 Years In the Fight Against Childhood Cancer 

Dr. Sidney Farber, who founded the Children’s Cancer Research Foundation in 1947, knew that a world without pediatric cancer was within reach. The foundation is dedicated to providing compassionate and cutting-edge treatment to pediatric cancer patients. Treatments, preventive measures, and cures for the future are the focus of the foundation’s dedicated research. The determination of Dr. Farber has led to the development of chemotherapy and the first-ever remissions of childhood leukemia. 

Today, the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center carries on Dr. Farber’s legacy through innovative research that has resulted in many of the advances in patient care that are used today. 

Let’s take a Closer Look at the Program’s Major Milestones

1947 – Acute lymphoblastic leukemia is the first malignancy to be successfully treated with chemotherapy thanks to Dr. Sidney Farber and his team of medical professionals and lab scientists. This is also the year that the Children’s Cancer Study Foundation (which later becomes the Dana-Farber Cancer Institute) was established. This is the first pediatric cancer program to offer “complete treatment” in one location, including clinical care, nutrition, social work, counseling, and more. Modern cancer treatment facilities now follow this approach as the standard in care for both adult and pediatric patients. 

1951 – The Jimmy Fund Building, which neighbors the Boston Children’s Hospital and is designated to treat childhood cancer patients is completed. Although surgery and inpatient care are still offered at Boston Children’s Hospital, pediatric cancer patients who need outpatient care can now be treated in the Jimmy Fund Building. 

1955 –The first remissions in Wilms tumor, a prevalent kind of juvenile cancer that appears in the kidneys, are attained by Dr. Sidney Farber and colleagues. They increase cure rates from 40 to 85% by adding the antibiotic actinomycin D to surgery and radiation therapy.

1973 – The federal government designates the Children’s Cancer Research Foundation as a regional comprehensive cancer center. During this same year, Drs. Stephen Sallan and Emil Frei ll launch the first of many continuing clinical trials for children with acute lymphoblastic leukemia (ALL). These clinical trials, presently offered by the DFCI/ALL Consortium, significantly enhance care and contribute to the current cure rates of 85–90%. In addition, Drs. Ronald McCaffrey and David Baltimore identify terminal deoxynucleotidyl transferase as a marker for acute lymphoblastic leukemia. 

1974 – The Children’s Cancer Research Foundation is renamed the Sidney Farber Cancer Center in recognition of its founder. 

1978 – Dr. Stuart Orkin creates genetic testing called restriction endonuclease mapping to identify thalassemia (an inherited blood disorder that causes your body to have less hemoglobin than normal) in pregnant infants. The creation of prenatal testing for sickle cell anemia in 1982 is the result of a similar method.

1983 – In recognition of the financial assistance provided by the Charles A. Dana Foundation, the Sidney Farber Cancer Institute is renamed the Dana-Farber Cancer Institute. 

1984 –Drs. David Nathan and Orah Platt find that hydroxyurea increases fetal hemoglobin. The discovery leads to the best therapy for sickle cell anemia that we have to date. Shortly following this, Dr. Orah Platt publishes the first in a string of groundbreaking research on growth and development, pain crises, and death in sickle cell anemia. In the same year,  Dr. David William develops retroviral vectors for the introduction of genes into hematopoietic stem cells, a process that creates the foundation for what is now known as gene therapy.

1997 – Dr. Joanne Wolfe establishes the Children Advanced Care Team (PACT), a model program for pediatric palliative care that is still used today. 

2006 – Dr. David Pellman identifies a group of genes that are therapeutic targets in hyperdiploid cancer cells since their deletion is only deadly in these cells.

2008 – A difficult-to-treat variant of acute lymphoblastic leukemia is brought on by a minor but significant epigenetic change, according to research conducted under the direction of Dr. Scott Armstrong. A mutation in the enzyme DOT1L causes aberrant chromosomal structural changes and the activation of usually silent genes.

2011 –Drs. Luigi Notarangelo, Sung-Yun Pai, and David Williams treat severe combined immunodeficiency, sometimes known as “Bubble Boy” syndrome, with gene therapy for the first time in the US.

2014 – Dr. Peter Manley’s research reveals that children who do not receive radiation therapy for low-grade gliomas have a higher chance of long-term survival.

2015- Dr. Lewis Silverman’s research reveals that prophylactic antibiotic use greatly lowers the risk of serious bacterial infections in kids during the crucial first month of acute lymphoblastic leukemia treatment (ALL). Although there is a high overall cure rate for ALL, one to two percent of children with ALL pass away during the first month of treatment due to complications, particularly infections.

2016 – According to a study by Dr. Lisa Diller, children with high-risk neuroblastoma who received two autologous stem cell transplants had a higher chance of being cancer-free three years later than those who only received one transplant.

Family-Centered Care at Dana-Farber/Boston Children’s Center

Doctors at the Dana-Farber/Boston Children’s center have more experience treating pediatric and young adult patients with cancer and blood disorders than any other center in New England, and most centers in the country as a whole. The center cares for over 5,000 children each year and while they are known for their scientific approach, their doctors never lose sight of the fact that your child isn’t just a patient, they are your child. The center specializes in cutting edge, family-centered care.

The center ensures that children feel as at ease as possible regardless of their care location. The campus includes family lounges, activity rooms, laundry facilities, and special resource rooms loaded with educational and entertaining activities in addition to welcoming and kid-friendly treatment rooms. Inpatient rooms even come with a bed for a parent, ensuring that those who are staying overnight never need to be left alone. 

The center also offers patient and family support services as a part of their mission to provide care for the family as a unit and lessen the disruptions that a cancer or blood disorder diagnosis might bring. Because it is not uncommon for a child to miss school during treatment, the center offers programs that enable them to have fun and continue their intellectual development. These programs offer creative activities, music therapy, educational materials, and social events like pizza and movie nights, all so that patients and their families can get together and socialize with others who are facing similar difficulties.

Supporting Dana-Farber 

I’ve had the privilege of serving as a governing trustee on the Board of Trustees at Dana-Farber Cancer Institute since 2018 and was recently appointed as the chair of the trustee science committee of the Board. Between groundbreaking research and compassionate care, donor support is critical to the work performed in the fight against pediatric cancer. Help Dana-Farber save lives by visiting their donor fund page here.

The Cameron Boyce Foundation’s “Cam For A Cause”

The Cameron Boyce Foundation held its very first inaugural fundraising event, ”Cam For A Cause: A Fundraiser for The Cameron Boyce Foundation To End Epilepsy”, on Wednesday 

May 18, 2022. The gala was organized to raise funds and awareness in the battle against epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP), which tragically claimed the young actor’s life in July of 2019.

The Foundation itself was established shortly after Cameron’s passing in an effort to honor Cameron’s philanthropic spirit while also funding epilepsy research. “It does help with the grieving. It doesn’t take it away, but it helps us put our energy somewhere,” explained Libby Boyce, Cameron’s mother. “I can’t tell you how many epileptic folks that we have met and talked to who just are so alone and so lost… and talking about all of these issues, this is something that we need to do because it has a huge impact on this earth,” she adds.

The immersive fundraiser was hosted at the Soho Warehouse in Los Angeles, California and  featured a moving performance by Alvin Ailey dancer Meagan King, who danced to an original song written by Hailey Knox and adapted from a poem written to honor Cameron by his mother. “We have decided that this will not be a sad event,” says Libby. “Moving the needle on epilepsy is just so critical to us, but it’s in this environment of joy.” 

Cameron’s father, Victor Boyce, states that he is proud of the progress and impact that the Foundation has made in the last three years. He notes that although COVID has made it difficult to do in-person events before now, they are excited for the opportunity to share their message with the world. This year would have been Cameron’s 23rd birthday. “Just thinking about that breaks my heart, every minute of every day…But, every year on his birthday..he wanted to give back and he would always do something to help others. In that spirit, that’s why we’re doing the gala.”

The event was attended by dozens of Cameron’s closest friends including Sofia Carson, Dove Cameron, Nolan Gould, Debby Ryan, Peyton List, Kenny Ortega and others. Many spoke out at the event about Cameron’s legacy and his lasting impact. “I think that Cam was the most alive person I’ve ever known,” says co-star and close friend Dove Cameron. “I think that in that, he has inspired me to be more alive, he has inspired me to be more human, more deeply feeling. Dove Cameron goes on to talk about the life-changing legacy her dear friend left behind, how he moved people in a way that no one else could, and about the peace he strived to bring into the world. Sophia Carson, who also performed at the event, echoed that sentiment, sharing that Cameron’s presence, loving him and being loved by him–felt like sunshine. “Cam always said that we all go, but what we leave behind should be bigger than us. That’s exactly what he did,” she says. 

Maya Boyce, Cameron’s sister, attended the event with close friends and said that she found comfort in the familiar faces after losing her brother. Maya shares that although she’s still feeling sad, she’s happy that the foundation has become a point of peace for her parents. “This has meant so much to them. My mom started the foundation a little less than three years ago, and this is exactly [Cameron’s] style — outdoors, intimate, with everyone he knows. It feels exactly like Cameron.”

Also in attendance were Sarah Gilman, Skai Jackson and Kevin Chamberlain, Pearce Joza, Miles Levin, Garrett Wareing, Jasmine Cephas Jones, Casey Simpson, Nathaniel J Potvin,  Kayla Maisonet, Aramis Knight, Carson Boatman, Nicole Elizabeth Berger (my daughter) and Seth Lee, among others.

For more information on epilepsy or to help contribute to epilepsy research, consider donating to The Cameron Boyce Foundation directly: https://www.thecameronboycefoundation.org/.

The Cam For A Cause Gala

The Cameron Boyce Foundation will hold its first-ever inaugural fundraising event, ”Cam For A Cause: A Fundraiser for The Cameron Boyce Foundation To End Epilepsy”, on May 18, 2022.  The gala will raise funds and awareness towards the fight against epilepsy and Sudden Unexpected Death in Epilepsy (SUDEP) which tragically caused the young actor’s death in July of 2019. 

For those who aren’t already aware, epilepsy is a common, yet complex neurological condition that causes recurrent seizures and affects over 50 million people worldwide. SUDEP refers to the sudden, unexpected death of someone who suffers from epilepsy but is otherwise healthy. According to the Centers for Disease Control and Prevention (CDC), one out of every 1000 people with epilepsy passes away each year in the United States from SUDEP.

The immersive fundraiser will take place at the SOHO Warehouse in Los Angeles, California, and many of the late star’s closest friends and colleagues are anticipated to attend. Meagan King, an Alvin Ailey dancer, will provide an emotive performance during the event. King’s dance will be set to an original tune composed by Hailey Knox, which was adapted from a poem written by Libby (Cameron’s mother and co-founder of TCBF) for Cameron. The gala, which will be hosted by actress Miranda May, is also likely to feature comedian Maz Jobrani.

“We’re really excited about this opportunity to really show what we’re doing, and to share our stories and help us move forward in our battle against epilepsy,” says Victor Boyce, Cameron’s father and co-founder of TCBF. “Cameron would’ve been 23 years old this year. Just thinking about that breaks my heart, every minute of every day. But, every year on his birthday, he didn’t want presents. He wanted to give back and he would always do something to help others. In that spirit, that’s why we’re doing the gala.”

“So many people know somebody with epilepsy,” says Libby. “There are so many situations where we found ourselves thinking, ‘Wow, why isn’t this louder? Why aren’t people talking about this?’ It’s just been in the shadows for too long”. Libby and Victor say their work with TCBF has also helped them cope with their grief. TCBF was founded in 2019 as a way to memorialize their late son’s altruistic passion while also raising funds to cure epilepsy via research and education.

Although the Cameron Boyce foundation has already made a significant impact on those who are affected by epilepsy, there is still much work to be done. “It starts with Cameron, and, we need this to be bigger than Cameron, because it affects so many people,” says Victor. “ It devastated our lives, but we’re not gone. We’re trying to recover, rebuild, and keep moving forward.”

Tickets for “Cam For A Cause” are available now. For more information, visit this event pageIf you are not able to attend the gala but would still like to support the cause, you can donate directly to The Cameron Boyce Foundation, here: https://kindest.com/cameron-boyce-foundation

The Dana-Farber Cancer Institute Celebrates its 75th Anniversary

The Dana-Farber Cancer Institute is known around the world for its dedication to both cutting-edge research and exceptional patient care. The Institute’s significant expertise in these areas has positioned its researchers to help develop and test several new cancer treatments in their laboratory and clinics. In fact, 35 of the 75 recently authorized cancer treatments were developed based on research conducted by Dana-Farber researchers. The Dana-Farber Cancer Institute is a founding member of the Dana-Farber/Harvard Cancer Center, a federally designated comprehensive cancer center, as well as a principal teaching affiliate of Harvard Medical School, a federally designated Center for AIDS Research, and a founding member of the Dana-Farber/Harvard Cancer Center.

The Institute is currently divided into two main campuses. One of which is located in Boston’s Longwood Medical Area and one in Chestnut Hill, MA. There are also several community-based locations across the state of Massachusetts that allow patients to receive Dana-Farber care, without the hassle of traveling into downtown Boston. The Institute now employs over 5,000 staff, faculty, and clinicians who support over 640,000 yearly outpatient visits, over 1,000 annual hospital discharges, and over 1,100 ongoing clinical trials.

Dana-Farber is primarily funded by the National Cancer Institute, the National Institute of Allergy and Infectious Diseases, and the Jimmy Fund, the Institute’s main fundraising organization.

The Jimmy Fund 

The Jimmy Fund is financed through community-based fundraising events and other activities that help Dana-Farber Cancer Institute’s lifesaving mission of compassionate patient care and breakthrough cancer research. Countless lives have been saved and the burden of cancer for patients and families around the world thanks to the generosity of millions of people in Boston and around the world.

With the help of the Variety Club of New England (an organization that raises funds for multiple organizations within the Voluntary Health Associations and Medical Disciplines area), the Jimmy Fund officially launched in 1948. The club was able to coordinate a radio broadcast from the bedside of “Jimmy,” a young cancer sufferer who was visited by members of the Boston Braves baseball team (the predecessor of the Boston Red Sox). Since then, the Jimmy Fund has produced a series of short films that act as movie trailers, inviting viewers to learn about the Jimmy Fund, the Dana-Farber Cancer Institute and to show their support.

Dana-Farber History and Major Milestones 

Before the Dana-Farber Cancer Institute became what it is today, it was first known as the Children’s Cancer Research Foundation. This foundation was established  by Sidney Farber, MD, with the purpose of providing compassionate, cutting-edge therapy to children with cancer while also creating future cancer preventatives, treatments, and cures. Within the following two decades, the foundation expanded its program to include patients of all ages. During this time the hospital was renamed in honor of its founder – the Sidney Farber Cancer Center. The name of the center was changed once more in 1983 in recognition of The Charles A. Dana Foundation’s (the Dana Foundation) long-term support when it officially became the Dana-Farber Cancer Institute. 

Let’s take a closer look at some of the Institute’s Major Milestones:

1954: The first remissions of Wilms’ tumor, a prominent form of childhood cancer, were achieved by Farber and his colleagues, who increased cure rates from 40% to over 80%.

1974: Drs. Emil Frei III and Stephen Sallan began the first of several clinical trials for children with acute lymphoblastic leukemia. These studies have made a significant contribution to the current cure rates of 85 to 90%. 

1996: The knowledge of how HIV multiplies and infects healthy cells made significant progress thanks to Institute researchers. During this same year, the Eleanor and Maxwell Blum Patient and Family Resource Center opened, and the Dana-Farber Marathon Challenge passed the $1 million mark with 400 participants running in the 100th Boston Marathon.

1998: Imatinib (Gleevec), a medication developed based on studies and research conducted at Dana-Farber, was shown to be highly effective in many patients with chronic myelogenous leukemia.

2001: Dana-Farber researchers discovered commonalities within cancer cells, indicating that many have surface proteins called PD-L1 that protect them from immune system T cells. This discovery paved the way for immunotherapy medications to be developed.

2010: The use of robotic technology in laparoscopic surgery on women with endometrial cancer was pioneered by surgeons at the Dana-Farber Brigham Cancer Center. In the same year, the Institute generated $1.18 billion for cancer research and care, new technology, and the Yawkey Center for Cancer Care construction.

2012: Dana-Farber opened a community cancer clinic at the Whittier Street Health Center in Boston’s Roxbury section. 

2014: The Institute introduced two new initiatives to extend its regional clinical care network.​ The first is a collaboration between Dana-Farber and Steward St. Elizabeth’s Medical Center in Brighton, where Dana-Farber provides hematology and medical oncology services. The second is the purchase of Commonwealth Hematology-Oncology (CHO), New England’s largest community-based cancer treatment program. CHO has been renamed Dana-Farber Community Cancer Care as a result of the acquisition.

2015: The Molecular Cancer Imaging Facility debuted. The center has a cyclotron, which produces short-lived radioactive isotopes that allow researchers to investigate the biological activity of anti-cancer medications in the body without having to do invasive operations like biopsies.

2017: Scientists at Dana-Farber and the Broad Institute introduced a personalized cancer treatment vaccine that targets specific “neoantigens” on tumor cells that can generate a potent, safe, and precisely focused anti-tumor response in melanoma patients.

2019: Dana-Farber established the Center for the Prevention of Progression, a first-of-its-kind clinic for patients with precursor disorders such as leukemia, myelodysplastic syndrome, or multiple myeloma who may develop a blood malignancy. By providing patients with a roadmap for clinical care and surveillance, the center assists scientists in developing drugs to prevent precursor disorders from advancing.

2020: Dana-Farber established new processes and regulations in response to the start of the COVID-19 pandemic. These new regulations assured that individuals could continue to be treated safely at the Institute and that staff could continue to work safely. Clinical research at the Institute stayed on track as a result of these efforts, with virtually all individuals remaining on clinical trials and new patients continuing to enroll in trials.

2021: The Dana-Farber – Chestnut Hill facility officially opened. During this same year, the US Food and Drug Administration provided approval of nivolumab (OPDIVO®), the first drug to target the PD-L1 protein on cancer cells, as well as approval for CAR T-cell therapy in adults with multiple myeloma, following a clinical trial led by Dana-Farber researchers.

Dana-Farber in the Community 

The Dana- Farber Cancer Institute conducts community-based cancer prevention, detection, and control programs throughout the New England area. They also maintain joint programs with other Boston institutions affiliated with Harvard Medical School and the Partners Health Care System, including Brigham and Women’s Hospital, Boston Children’s Hospital, and Massachusetts General Hospital, all while providing advanced training in cancer treatment and research for an international faculty. The Community Benefits office at Dana-Farber supports the Institute’s mission of lowering cancer risk among medically underserved communities.

Here are just a few of the life-changing programs that run through the Institute’s benefits office. 

As a global leader in cancer research discovery and innovation, Dana-Farber is acutely aware that their groundbreaking research — and the innovative care that results from it — must be equally accessible to all patient populations. This is why Dana Farbar is committed to increasing the scope of our cancer disparities research, increasing the number of minorities participating in clinical trials and then bringing their findings into clinical practice and public health spaces across the world. 

Since 2018, I have had the great honor of serving as a governing trustee on the Board of Trustees and Dana-Farber Cancer Institute. For more information, or to keep up to date on the Dana-Farber Cancer Institute, visit: https://www.dana-farber.org/

Frequently Asked Questions About Epilepsy

Epilepsy is a complex neurological condition that affects millions of people worldwide. If you or a loved one is experiencing epilepsy for the first time, it is likely that you are looking for additional information about what this condition is, and how it can affect daily life. Let’s take a closer look at some of the most commonly asked questions when it comes to epilepsy.

What Is Epilepsy?

Epilepsy, which is sometimes referred to as a “seizure disorder”, is a neurological condition that causes recurrent seizures. These seizures can affect a wide variety of mental and physical functions. Most often a person will be diagnosed with epilepsy after experiencing two or more seizures that are more than twenty-four hours apart, so long as the seizures were not triggered by any particular event such as a stroke, brain injury, infection etc. These seizures are caused by aberrant electrical activity in the brain that occurs suddenly.

What is A Seizure?

Simply put, a seizure is a disturbance in the normal regulation pattern in the electrical activity of the brain. Seizures can have a variety of causes and effects, however the most common characteristic is a wave of uncontrolled electrical activity that spreads throughout the body.

A person having a seizure will usually exhibit external symptoms as a result of abnormal brain activity. Muscle spasms, mental confusion, loss of consciousness, and/or uncontrolled or aimless body motions are some of the most common signs and symptoms of a seizure. Some seizures might resemble a staring spell, while others may cause a person to collapse, shake uncontrollably, and loose awareness of their surroundings.

The underlying causes of a seizure can be complex and can be caused by a range of triggers including but not limited to:

  • Misuse of medication
  • Flashing lights
  • Stress
  • Poor sleep habits 
  • Caffeine
  • Misuse of alcohol or drugs
  • Alcohol or drug withdrawal
  • Changes in blood sugar
  • High fevers
  • Menstruation

Typically seizures will last anywhere from a few seconds to a few minutes and then fade away on their own; this will depend on the type of seizure, which will be determined by where it begins and then extends across the brain.

What Types of Seizures Are There

Seizures can be classified into two different groups. It’s important to note that a person with epilepsy can experience more than one kind of seizure. 

Generalized seizures are seizures that start with a sudden burst of irregular electrical activity that quickly spreads over the entire brain. Tonic-clonic convulsions (also known as “grand mal” seizures) and absence seizures  (“petit mal” or staring seizures) are two forms of generalized seizures.

Partial seizures (also known as focal seizures) start with abnormal electrical activity in only one area of the brain. Although the activity begins in one section of the brain, it can expand throughout. Simple partial seizures, complicated partial seizures, and secondarily generalized seizures are among these seizure types.

 

If I Have Had A Seizure, Does That Mean I Have epilepsy? 

Epilepsy is a long-term condition that changes how electrical activity and connections in the brain operate. Because epilepsy is characterized by spontaneously recurring seizures, a single seizure does not always indicate epilepsy. Although seizures are the primary symptom of epilepsy, they can be caused by various other medical issues.

What Causes Epilepsy? Who Is At Risk? 

While the specific origins of epilepsy are not entirely known, epilepsy and seizures are thought to be caused by abnormal signals sent by neurons (a type of brain cell) in the brain. For two-thirds of people with diagnosed cases of epilepsy, the root cause is unknown. This type of epilepsy is categorized as cryptogenic or idiopathic. These types of cases account for 40% of cases worldwide. 

Research indicates that epilepsy can be hereditary in some cases, meaning that it is the result of mutations in a person’s genes. Different conditions that impact a person’s brain can also induce epilepsy. Some known causes include: 

  • Severe head trauma 
  • Infectious diseases 
  • Brain infections from parasites such as malaria and neurocysticercosis
  • Brain infections from various viruses, and bacteria 
  • Strokes 
  • Brain tumors
  • A loss of oxygen (during birth, for example) 
  • Down Syndrome
  • Other neurological diseases such as Alzheimer’s disease
  • Other brain structure abnormalities

What Risk Factors Are Associated with Epilepsy? 

It’s important to know that epilepsy is not uncommon and that the condition can affect anyone. That being said, there are certain risk factors that can increase your risk of developing epilepsy: 

    • Age: Onset epilepsy is most common in children and older adults  
    • Family History: Genetics can play a role in the development of epilepsy 
    • Head Trauma: Severe head injuries have been linked to developing cases of epilepsy
    • Stroke and Other Vascular Disease: These can lead to brain damage that can trigger epilepsy to develop.
    • Dementia and Other Neurological Diseases: These affect brain activity and cause brain damage.
    • Brain Infections: These can cause inflammation in the brain/spinal cord
    • Other Nervous System Conditions: Can affect brain activity

How Common Is Epilepsy? 

Epilepsy is one of the most common neurological disorders, affecting more than 5.1 million in the United States and 50 million individuals worldwide. Research indicates that epilepsy affects one out of every 26 people at some point in their lives.  

According to the latest estimates, about 0.6% of children aged 0-17 years have active epilepsy. For reference, this would mean that out of 1,000 children—six of them could be affected by the neurological condition.

How Is Epilepsy Diagnosed? 

Epilepsy is diagnosed most commonly when a person has two or more seizures that occur more than twenty-four hours apart and are not triggered by a specific event such as a stroke, brain injury, infection, fever, or blood sugar problems.

This diagnosis neurologist or an epileptologist ( a doctor that specializes in epilepsy) after undergoing a series of tests, and reviewing your medical history. This review should include a detailed recounting of any seizures that have occurred. The neurological examination most commonly includes an EEG ( electroencephalogram) and an MRI (magnetic resonance imaging). This often takes place over the course of several appointments. 

It’s important for a person who has had a seizure for the first time to talk to a primary care provider as they can provide more information about next steps.

If I Have Epilepsy, Will I Still be Able to Drive? Play Sports? Exercise? 

The answers to these questions will vary from person to person based on the severity of their epilepsy and their own specific triggers. If you have been diagnosed with epilepsy or have a history of seizures, it’s best to consult with your doctor prior to operating heavy machinery or participating in high risk or strenuous activities.

In America, most states (as well as the District of Columbia) will not grant a driver’s license to someone with epilepsy unless they can show proof that they haven’t had a seizure in a certain amount of time. Depending on your location, the seizure-free time requirement can be anywhere from a few months to over a year. They may even require a letter from a doctor that states that the person’s seizures:

  • are nocturnal seizures (meaning that they only occur during sleep)
  • would not be a distraction from driving
  • typically present warning signs ahead of time 

When it comes to playing sports and other potentially strenuous activities, it can be reassuring to know that exercise is rarely a trigger for seizure activity. In fact, many doctors encourage experience as studies indicate that it can improve seizure control as well as improve your physical and mental well-being. That being said, it is important to avoid sports or exercise-related injuries as these can trigger seizures.

 

How Is Epilepsy Treated? 

There are numerous things that a physician and a person with epilepsy can do to help prevent and reduce recurrent seizures. Beyond anti-seizure medication, the most prevalent epilepsy treatments are surgery, vagus nerve stimulation, and changes in diet. Researchers and scientists still have several investigational interventions in development meaning that new forms of treatment may be available in the future.

 Anti-Seizure Medication 

Anti-seizure medications are the current cornerstone of epilepsy treatment. These medications limit the spread of seizures in the brain. Recent developments in these medications have provided more effective results as well as better side effect profiles. Studies have shown that these medications work for 2 out of 3 people with epilepsy.

Epilepsy Surgery

There are several different types of surgeries that can assist with the management of epilepsy. One type of neurosurgery that can be used to treat epilepsy involves removing the portion of the brain that is suspected to be the source of the seizures. Removing that area may prevent future seizures or make them simpler to control with medication. Another type involves disconnecting the seizure-causing region of the brain from the rest of the brain. Around 70% of people who have temporal lobe surgery discover that it ends their seizures and they become seizure-free, while another 20% find that their seizures are decreased as a result of the procedure.

Vagus Nerve Stimulation 

The vagus nerves are two nerves that originate in the brain and go throughout the body. They transmit information from the brain to the rest of the body. Vagus Nerve Stimulation therapy is an epilepsy treatment that incorporates a stimulator (or ‘pulse generator’) that is attached to the left vagus nerve in the neck. Regular, mild electrical stimulations are sent across this nerve by the stimulator which helps regulate the erratic electrical brain activity that causes seizures. This treatment option is less invasive and is typically used when surgery and medications are not viable options.

Ketogenic Diets

For children or adults with epilepsy whose seizures are not controlled by Antiepileptic medications, the ketogenic diet is one treatment option. The diet may help to minimize the number of seizures and their severity, as well as have other beneficial effects. The ketogenic diet (KD) is a high-fat, low-carbohydrate, low-protein diet that has been used to treat epilepsy since the 1920s. 

Normally, the body gets its energy from glucose (a type of sugar) found in carbs (things like sugar, bread, and pasta). When the body burns fat for energy (a process known as ketosis), chemicals called ketones are produced. When you follow a ketogenic diet, your body will mostly rely on ketones for energy rather than glucose. Decanoic acid, a type of fatty acid, has been linked to the way the diet operates, according to research.

This type of medical treatment is usually considered only after at least two other treatments have failed.  It’s important to note that this diet is not suitable for everyone. Discuss this with your neurologist as well as a certified dietician before moving forward with this treatment option.

 

Can Epilepsy Be Self-Managed? 

Self-management is something that can be done in conjunction with your epilepsy treatment and is an effective way to help manage seizures while still living a full and active life. When it comes to self-managing your epilepsy it is imperative that you: 

  • Take the proper doses of your medication and take them at the right times
  • Discuss any questions or concerns you have with your primary care physician, neurologist, or epileptologist 
  • Recognize your own specific seizure triggers (such as flashing or bright lights)
  • Keep a record of your seizures either in a diary or on your devices 
  • Maintain a consistent sleep schedule 
  • Do what you can to lower stress levels

For more information on epilepsy or to help fund epilepsy research, consider my most recent affiliation: The Cameron Boyce Foundation, which aims to cure epilepsy via research, education, and awareness campaigns in honor of Cameron Boyce’s legacy: https://www.thecameronboycefoundation.org/.

The Difference Between an Epileptologist vs. Neurologist

Epilepsy is one of the most common neurologic illnesses, affecting over 50 million people across the globe. A question that is often asked when it comes to epilepsy, is who should see a neurologist, who should see an epileptologist, and what the difference between the two actually is. Let’s take a closer look at what differentiates these two types of physicians and what factors may lead someone with epilepsy to seek out an epileptologist. 

What is a Neurologist? 

To understand the difference between an epileptologist and a neurologist, we must first understand what neurology is. To put it simply, neurology is the discipline of medicine that deals with the anatomy, functions, and organic disorders of nerves and the nervous system. The nervous system is a sophisticated system that controls and directs physiological functions. A neurologist is a doctor who specializes in (and is an expert in) the medical field of neurology.

Before becoming fully qualified, neurologists must complete over eight years of training, including four years of medical school resulting in an M.D or D.O (doctor of medicine or doctor of osteopathy degree), a one-year internship in either internal medicine or medicine and at least three years of specialty training in an accredited neurology residency program.

A neurologist can help with a variety of problems that affect the brain, spinal cord, and nerves such as: epilepsy, Alzheimer’s disease, dementia, Parkinson’s disease, neuromuscular disease, movement disorders, spinal cord disorders, infections of the brain, speech and language disorders, cerebrovascular disease (strokes), as well as the different medical and surgical options available to treat those illnesses. While neurologists should have a working knowledge of what medication-assisted and surgical options are available, it’s important to note that surgical procedures are not performed by neurologists. Any operation involving the brain or nervous system  is performed by a neurosurgeon who generally requires at least another three years of post-graduate training..

 

What is An Epileptologist? What are the Key Differences Between the Two? 

Where some physicians may choose to become general neurologists (which means they will treat a broad range of nervous system disorders), others may opt to specialize in a single condition and only see patients with that condition. An epileptologist is a neurologist that specializes in epilepsy research, diagnosis, and treatment. 

Because epileptologists are first trained as neurologists, their education and training is similar but ends in an additional one to three years of training which is referred to as a fellowship. These fellowships can vary in type, duration, proportion of patient care, type of center, and volume of patients treated. During the fellowship, the physician learns from expert epileptologists and is further trained in the field of epileptic diagnostic and treatment methods. Some epileptology fellowships require doctors to conduct research on a topic related to their field of study (comparable to a dissertation). Some epileptologists receive even further training and are actively involved in the study of specific patient populations. These subspecialties include pediatric and geriatric epileptologists, as well as epilepsy specialists for women.

Although board certification from the American Board of Psychiatry and Neurology is not required, most epileptologists do seek board certification. That being said, epileptologists (like all other doctors) must have a valid state medical license and participate in continuing medical education.

The key difference between an epileptologist and a neurologist is that an epileptologist’s training typically extends for several years through post-graduate work with a unique focus on all aspects of diagnosing and treating epilepsy. An epileptologist is typically consulted later in the process when an epilepsy patient  has not responded to the first rounds of treatment, although they may be brought on early if a person’s epilepsy is more complex.

Who Should See an Epileptologist?

Many people with epilepsy are able to control their seizures with the help of medication and can be followed by their primary care physician with only some visits to their neurologist over the course of their disease.. However, around one-third of patients with epilepsy experience seizures that are resistant to treatment (referred to as “refractory” or “drug-resistant epilepsy”). In cases where a person’s epilepsy is not controlled effectively within the first four to six  months of treatment, it is important to see an epileptologist. 

An expert (epileptologist) opinion may be required for a variety of reasons, including the choice of medication combinations, managing adverse effects due to the medications, pregnancy, and other difficulties related to disability or driving. In order to further understand a person’s specific case of epilepsy, an epileptologist will often recommend starting with EEG-video monitoring, which can lead to the correction of diagnosis, medication adjustments, or surgical procedures where needed.


Signs it’s time to consult with an epileptologist:  

  • If you’re looking for a second opinion or would like to confirm your epilepsy diagnosis
  • If your seizures are not controlled after three months of care from your primary care physician or one year of care from a general neurologist
  • If your seizures are not manageable by medication, despite trying multiple courses of treatment
  • If you’re experiencing side effects from your current epilepsy medications 
  • If you have any other medical conditions or factors that influence/ are affected by epilepsy
  • If you have epilepsy and you’re expecting a child or wish to start a family

 

Benefits of Being Treated By An Epileptologist?

An epileptologist has advanced specialized training and is an expert when it comes to seizures and epilepsy and may be better equipped to optimize treatment options and ensure that patients and families are aware of the risks of epilepsy, even if effectively treated. Sudden death from epilepsy (known as SUDEP) is not widely discussed by generalists, and it’s very important to be aware of the risks and ways to prevent it.  Even if more advanced testing is needed, an epileptologist will have extensive experience with these procedures. This expertise can make the difference between having controllable and uncontrollable seizures, improving the patient’s quality of life overall.

It’s important to note that none of these criteria for seeing an epileptologist and seeking further care are fixed.  Many specialists believe that all children and most adults who have seizure disorders should be seen regularly by epileptologists.  

For more information on epilepsy, consider my most recent affiliation: The Cameron Boyce Foundation, which aims to cure epilepsy via research, education, and awareness campaigns in honor of Cameron Boyce’s legacy: https://www.thecameronboycefoundation.org/.

SUDEP: What You Need To Know 

According to the CDC (Center for Disease Control and Prevention), studies suggest that 1 in every 1000 people with epilepsy pass away from SUDEP each year. Yet many are still unaware as to what SUDEP is or how they may be affected. Let’s take a closer look at SUDEP and what factors make this more likely to occur.

What is SUDEP and How is It Related to Epilepsy 

SUDEP refers to the sudden, unexpected death of someone who suffered from epilepsy but was otherwise healthy. The term epilepsy refers to a neurological condition that causes seizures. Most often, epilepsy is diagnosed when a person experiences two or more seizures that are more than twenty-four hours apart and are not caused by any particular event such as a stroke, brain injury, infection, fever, or blood sugar abnormalities. That being said, a person can also be diagnosed with epilepsy if they have had one or more unprovoked seizures and there is a significant chance that they will have more in the future. While the specific origins of epilepsy are unknown, epilepsy and seizures are thought to be caused by aberrant signals sent by neurons in the brain. 

When an autopsy is performed on SUDEP patients, no other cause of death is discovered. SUDEP is the leading cause of death for those with uncontrolled seizures. Individuals who have passed away from SUDEP are frequently discovered face-down in bed, without having experienced a convulsive seizure; however, it is not uncommon for there to be a witnessed seizure close to the time of passing.  

What Causes SUDEP?  

Although the exact cause of SUDEP is not currently known, more recent studies indicate that problems with breathing, heart rhythm, and brain function may lead to SUDEP-related deaths. 

Complications In Brain Function     

Seizures can affect the operation of key brainstem areas by suppressing or interfering with them. Breathing and heart rate, as well as other vital physiological functions, are controlled by these areas. As a result, alterations in brain function may lead to harmful changes in breathing and heart rate. It is not uncommon to see a flattening of the brain waves after a seizure. This is known as postictal generalized EEG suppression. This pattern was discovered in the EEG records of persons who died of SUDEP while being monitored.

Breathing Complications 

Breathing problems or difficulties are not uncommon with seizures and are frequently observed in connection with SUDEP. A seizure can cause a person to cease breathing for a short period of time either due to a blockage of the airways or a lack of control in the brain. These breathing pauses can limit the amount of oxygen delivered to the heart and brain if they remain too long. If not treated immediately, a lack of oxygen can be fatal. During a convulsive seizure, a person’s airway may get closed, resulting in asphyxia (an inability to breathe). Seizures can also result in an increase of fluids in the airways or in the lungs, which can make breathing difficult. In some cases of SUDEP, spasms of the larynx and suffocation have been reported.

Complications With Heart Function 

Research indicates that changes in heart function could play a role in how SUDEP occurs. Because seizures have been known to affect heart rhythms, they can occasionally result in a hazardous heart rhythm or cardiac arrest. Cardiac arrhythmias (an irregular heartbeat) can occur during seizures, and seizure-induced physiological changes can exacerbate those arrhythmias, in some cases leading to death.

Takotsubo Syndrome, a disorder in which the heart muscle does not function properly after great stress, can be caused by severe seizures and is believed to have a correlation to SUDEP in some cases. Cardiac failure, shock, arrhythmias, and blood clots account for 8% of deaths in patients with Takotsubo Syndrome. 

Certain genetic heart conditions such as Long QT syndrome, which can also cause sudden death, are also being investigated for their connection to SUDEP. Patients with Long QT syndrome show mutations in a multitude of genes that affect the electrical activity of cardiac cells. Because comparable gene changes might influence brain cell electrical activity, researchers are investigating whether these illnesses increase the risk of seizures and sudden death.

What are the Risk Factors Associated with SUDEP? 

It’s important to know that the severity of an individual’s epilepsy is the most reliable risk factor when it comes to SUDEP. The main risk factors associated with SUDEP are: 

  • Uncontrolled and/or frequent seizures 
  • Generalized convulsive seizures (also known as tonic clonic or grand mal)  

Other possible risk factors can include:

  • Nocturnal seizures 
  • Seizures that begin at a young age
  • Missed doses of medicine or poor adherence to treatment 
  • Over-consumption of alcohol 
  • Having lived many years with epilepsy

 Can SUDEP Be Prevented? 

Until further information becomes available, the best strategy to avoid SUDEP is to keep your seizures under excellent control. Most people with epilepsy are now able to control their condition with accessible medications and proper seizure-management techniques. This can include avoiding seizure triggers and enlisting the help of an epilepsy specialist. There are also efforts that a person with severe epilepsy can take to reduce their risk. For example, this can include  epilepsy surgery, neuro-stimulation devices, and even nutritional therapy. 

General steps to reduce the risk of SUDEP may include:

  • Taking medication regularly and at the correct dosage
  • Referral to an epilepsy specialist who can offer the most up-to-date treatment and diagnostic options
  • Consider epilepsy surgery if the condition is non-responsive to medication 
  • Avoid known seizure triggers
  • Manage stress
  • Avoid drinking too much alcohol
  • Learn how to control epilepsy via self-management programs
  • Get the proper amount of sleep
  • Talk to a doctor about a cardiac evaluation 
  • Ensure that family, friends, and co-workers are trained in seizure first aid.
  • Consider some form of nocturnal supervision as a precaution 

Support and Spreading Awareness

As previously mentioned, there are still many people in the world, even those who are affected by epilepsy who are unaware of SUDEP or the risk factors associated with it. One of the most effective steps we can take towards helping spread awareness for SUDEP is to share accurate information and support foundations who are dedicated to curing epilepsy and stopping SUDEP. 

When searching for information on epilepsy, consider my most recent affiliation, The Cameron Boyce Foundation, that aims to cure epilepsy by sponsoring research, as well as education and awareness campaigns in honor of Cameron Boyce’s legacy: https://www.thecameronboycefoundation.org/

What New Antiviral Medications from Merck and Pfizer Could Mean for the Future of COVID-19 

As the SARS-CoV-2 virus that causes COVID-19 continues to mutate and potentially undermine the effectiveness of current vaccines, Merck and Pfizer’s antiviral medications provide hope. Research indicates that these medications are expected to work against all versions of the virus, which could potentially change the course of the pandemic, offering a treatment that could withstand mutations. 

Let’s examine how these two antiviral medications function and what this could mean for the future of this virus. 

What Are The New Covid Medications and How Do They Work?  

Molnupiravir and Paxlovid are two new oral antiviral drugs developed to help the body fight against SARS-CoV-2. Molnupiravir was originally invented at Drug Innovations at Emory (DRIVE), LLC, but the pharmaceutical company Merck has been developing the Molnupiravir medication in conjunction with Ridgeback Biotherapeutics. Pfizer, the same company that developed one of the three FDA-approved COVID-19 vaccines has developed the other current oral antiviral medication, Paxlovid. 

Both the Paxlovid and Molnupiravir are administered as a series of pills, taken twice daily over the course of five days. Paxlovid is taken with one dose of the additional pill Ritonavir, which is a medicine that helps keep other medicines active in the body for longer periods of time. 

To fully comprehend how Paxlovid and Molnupiravir function, we must first take a look at how the coronavirus functions. Once the virus enters a human cell, it generates a copy of itself, allowing it to quickly spread and move through the body on its way to infect others. Once the medication is taken, it begins inactivating certain components of the virus’s replication mechanisms, which in turn prevents it from growing and spreading. 

What is the Difference Between Paxlovid and Molnupiravir?

The main difference between the two medications is the phase of virus replication in which they attack. Molnupiravir causes the amino acids that make up proteins to be rearranged, resulting in faulty proteins — and a virus that is unable to infect new cells or replicate itself.  This drug is a nucleoside analogue with a mechanism of action that tries to build faults into the virus’s genome coding. The potential worry about this medication is that it theoretically can cause unexpected mutations in the body outside of the virus. 

Paxlovid, on the other hand, disrupts the virus’s second stage of reproduction, when it uses a type of enzyme called a protease to shred the protein string in precisely the right places, forming the virus’s building blocks. Proteases function as molecular scissors, cutting large molecules into smaller fragments that aid in the creation of new viruses. The medicine inhibits the enzyme, preventing the virus from progressing past this point. 

How Effective are these COVID Medications? 

Due to the nature in which these drugs fight the virus, research indicates that they will likely remain effective against future variants, even if protection from our current vaccines and treatment begin to wane.

The trial figures provided by the two companies suggest Pfizer has the more effective and safer medicine out of the two. Pfizer released their preliminary results showing that their drug reduced the risk of serious illness and death by nearly 90 percent.  Merck’s data analysis shows that when taken within five days of the onset of symptoms, the Molnupiravir pill can reduce the risk of serious sickness, hospitalization, and death by 30 percent. It’s important to note that these results may change upon further testing and real world experience across the globe.. 

What Does This All Mean for the Future of COVID-19?

According to the National Institutes of Health (NIH), there are only three current FDA authorized treatments for COVID-19 patients who have not been hospitalized. However, these are all monoclonal antibody treatments, which are administered using intravenous (IV) infusions or injections and require an outpatient visit. In contrast, these new medications are cheaper to make and even easier to distribute and take, which makes it a more accessible option overall, especially in places of the world that do not have good vaccine coverage. 

However, there are still concerns about potential side effects of this type of drug, which could mean that it would not be recommended for all age groups or demographics. For example with Molnupiravir,  there are currently concerns that the drug may trigger the development of new variants or that they may interfere with fetal development during pregnancy. 

Because the Pfizer drug attacks during a different stage in the reproductive process of the virus, these same concerns do not directly apply. The secondary  pill Ritonavir that pairs with Paxlovid has been known to cause mild side effects such as nausea and vomiting. 

Drugs such as Paxlovid and Molnupiravir could change the course of the pandemic if real-world applications match trial results. The SARS-CoV-2 virus has killed over 5.3 million people across the globe in large part due to its ability to mutate and spread. Continuing to discover and develop  similar medications that target other aspects of the virus would give us a higher chance of mitigating the risk of COVID-19 infection.

It’s important to note that these new treatments are not intended to be a substitute or replacement for vaccination. The pills were designed to be taken by someone who has fallen ill, as an additional support.

Preparing for the Next Pandemic: How Can We Be Better Equipped? 

COVID-19 is not the first virus to cause a pandemic, and unfortunately, it’s unlikely to be the last. We’ve seen firsthand how a viral outbreak can sweep across the world without the proper tools and protocols set in place to prevent a local epidemic from becoming a pandemic affecting people throughout the world.

Research indicates that the next pandemic could have an even more catastrophic impact and that its timing is impossible to predict. Because there is a reasonable likelihood that another pandemic is on the way, possibly even within the next decade, it is imperative that we improve our capabilities in order to better handle this type of viral threat along with any other biological hazard. 

Learning From the Past

The COVID-19 pandemic has exposed serious, fundamental flaws within America’s public health care system. Needing to strengthen our public health workforce and financing, revamp our data systems, and improve accessibility and communication between governments as well as between governments and the public, are just a few of the issues that need to be confronted. In order to better protect humanity against these types of biological threats, there are four critical public health gaps that must be addressed. 

1. Strengthen Our Medical Defense 

Improving vaccinations, therapies, and diagnostics are crucial steps in revolutionizing our medical defenses. Ideally we would have the ability to quickly and accurately access any virus family, making it possible to create an effective vaccine within a short period of time. In addition, production, distribution and administration of these vaccines would be streamlined and efficient across the country. Equally as important will be to have simple, reliable, and accessible diagnostic testing and treatment available after the recognition of an upcoming threat. The White House Office of Science and Technology set as its goal being ready with a new vaccine within 90 days of the emergence of any new threat.  

 2. Ensure Domestic and International Situational Awareness 

The ability to detect viruses shortly after emergence would aid greatly in providing early warning and real-time updates for infectious threats. First, we would need to provide this type of detection in clinical settings both domestically and internationally. In order to do this, we would need to incorporate routine genome testing of samples from patients with unexplained symptoms such as a fever or respiratory issues. This will help us to detect emerging viral infections before they become widespread. The same concept should be applied to environmental monitoring, the difference being that the samples would come from wastewater. 

Following that, we would need to create a global warning network: a system that connects us with real-time information about symptoms and other relevant information. 

3. Develop More Robust Public Health Systems 

We must update public health infrastructure around the world in order to enhance public health systems and effectively respond to catastrophes. Not only do we need to reform our public health workforce, but we also need to restructure the funding for research and infrastructure in high-risk areas both domestically and abroad. Furthermore, evidence-based public health communication should be a top priority. This would mean governments and public health officials would provide consistent, accurate, and free information to all residents. This information would be based on the conclusions of rigorously evaluated experiment results, and would support the data presented.

4. Focus on PPE & Biotechnology Development

Personal protective equipment (PPE) accessibility is a key challenge. Because pathogens can have a variety of features and capabilities of their own, we need to design ways to boost the overall effectiveness, usability, affordability, and even the comfort of said PPE. In addition, we need to develop the capacity to produce and deliver products quickly so that there is no supply chain disruption or shortage. 

Another key concern is biosafety and the prevention of high-impact biological occurrences. We will need to expand our capacity to detect and mitigate safety/security hazards in biotechnology design and development, as well as share these tools globally, all while preventing and detecting the development of bioweapons.

Where Do We Stand Currently? 

While it appears we are moving in the right direction in some of these initiatives, the rate of progress is not currently as fast or cohesive as it would need to be in order to ensure these goals are met before the next pandemic occurs. We need a unified and adequately funded program to prevent catastrophic pandemics from killing millions of people around the world.  We also need to recognize that pandemics require a team effort so that patients in low and middle income countries are not left out of the solution. Mutations can occur anywhere.

What Can You Do to Prepare for the Next Pandemic at Home? 

Given the likelihood that another worldwide pandemic may strike in the not-too-distant future, it’s a good idea to prepare and remain current on the newest information available. It is highly advisable that you: 

  • Get vaccinated and continue taking protective measures against viral threats. 
  • Reach out to your state and federal representatives urging them to push forward on public health planning with urgency. Pandemic planning requires strong local public health departments and sustained global funding.
  • Support governmental representatives who prioritize public health and pandemic planning.
  • Educate yourself about how to prevent the spread of disease. It is important to know that viruses like SARS-CoV-2 are most likely to spread from person to person and may be airborne like COVID-19. 
  • Prepare for the possibility of lockdowns and closings.
  • Create an emergency plan to ensure that you and your family know what to do in case of an outbreak. 
  • Prepare yourself by learning basic medical knowledge, food preservation skills, and the techniques to build physical security at home. 
  • Examine your health insurance coverage to see what is covered, including telemedicine.