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Herscot Center for Tuberous Sclerosis Complex
THRIVE offers patient groups for our patients with TS. Leigh Horne Mebel, MSW, LICSW is in charge of running the groups. Ms. Mebel is one of the Thrive program founders and has extensive experience with TS and with individual and group therapies. When patients participate in structured group programs they have opportunities to increase their coping skills, learn new ways to help them navigate our complex social world, and develop their ability to self-regulate. Connecting with other patients experiencing similar emotions and sharing similar challenges can be an opportunity to normalize experiences and also learn new skills.
As part of the Patient Groups, the Thrive Program provides mentorship training for interested participants. Patients who are mentored benefit from being provided with role models, encouragement from other patients with similar backgrounds, and help building social skills and a greater connectedness to others. Training of peer mentors is designed to help patients build their communication, planning and reasoning skills and strengthen their ability to take others' perspectives.
If you are interested in this event, please contact the THRIVE program at 617-724-2954.
Stress Management and Resiliency Training
Develop Lifelong Techniques for Managing Stress and Anxiety. This program is brought to you by the MGH Thrive program in collaboration with the Benson- Henry Institute. The Benson-Henry Institute for Mind Body Medicine offers resiliency-building skills that can make all the difference! Their research-based approach has been proven to help reduce anxiety, and strengthen memory.
In this 1-session workshop, you will learn:
Leadership: This program is led by Rana Chudnofsky, MEd, under the administration of BHI Senior Director Marilyn Wilcher
For more than 30 years, the Benson-Henry Institute has provided relaxation response-based coping skills and life management tools to help participants better manage daily stress and improve overall health.
Doggonit: Epilepsy is Ruff
During this 6 week session, adolescent epilepsy patients will work with a certified trainer to train rescue dogs twice per week. The goal of this activity is to improve the quality of life for both patients and dogs. The adolescents and rescue dogs will learn from each other as they work together and teach each other valuable life skills.
Thrive is offering a weekend group session for the siblings of our patients. This group is open to children between 9 and 16 years old. The event will include crafts, games and activities. When children participate in structured group programs they have opportunities to increase their coping skills. Connecting with other children experiencing similar emotions and sharing similar challenges can be an opportunity to normalize experiences and also learn new skills. Leigh Horne Mebel, MSW, LICSW is in charge of running this group. Ms. Mebel is one of the Thrive program founders and has extensive experience with pediatric epilepsy and with individual and group therapies.
Ketoween: Halloween for our patients on Dietary Therapy
Wear your costumes and come celebrate with crafts and spooky fun! This year's event will be at the Museum of Science in Boston. Kids will have access to the museum for the full day following the event.
NEW Virtual Parent Group
We know how busy life can be as a parent, therefore, we are trying out a format change for our Parent group. We hope that conducting this group virtually will make participation easier for those near and far. We will also be changing our format by introducing a different topic for each session. Each meeting will start with a presentation on the topic and then an opportunity for questions and open discussion.
Parent groups offer parents the opportunity to share their experiences as well as to develop strategies to help their child manage difficulties with attention and emotional behavioral dysregulation. This group, led virtually by our Pediatric Epilepsy Social Worker and Nurse, will be held the first Thursday of every month. Please call our office for more details: 617-724- 2954.
NEW Virtual Adolescent Social Group
Connect with peers over common interests: tv shows, books, movies, sports. This virtual group allows our adolescent patients to connect with each other in a low pressure online setting. This group will be guided by our Social worker and Nursing staff.
This activity will serve to allow anxious or shy patients to ease into a social setting; peers that may be going through similar experiences due to their medical condition. Each 4 week session will focus on a different topic.
Please call our office for more details: 617-724- 2954.
Friday, November 18, 2016 Research
Neurologist Elizabeth Thiele explains that diagnosis of TSC is based on the clinical features common in the disorder.
Neurologist Elizabeth Thiele explains that TSC is a genetic disorder than can be passed down through a family.
Neurologist Elizabeth Thiele discusses the difference between spontaneous mutations and inherited TSC.
Neurologist Elizabeth Thiele discusses the variability and spectrum of tuberous sclerosis complex.
Neurologist Elizabeth Thiele explains how new technology and research have changed the diagnosis and treatment of TSC.
Neurologist Elizabeth Thiele describes the three types of brain findings that are common in people with TSC.
In this video, neurologist Elizabeth Thiele explains that autism spectrum disorder is often associated with TSC.
Neurologist Elizabeth Thiele provides an overview of how TSC can affect the eye.
Pediatric cardiologist Ana Maria Rosales provides an overview of how TSC can affect the heart.
Nephrologist David Steele provides an overview of how TSC can affect the kidneys.
Pulmonologist Jayaraj Rajagopal discusses how lymphangioleiomyomatosis (LAM) can affect the lungs in people with TSC.
In this video, psychiatrist Nicole Danforth explains that mental health concerns can change as a person with TSC ages.
Psychiatrist Nicole Danforth provides an overview of the mental health and behavioral issues that are common in TSC.
Psychiatrist Nicole Danforth gives an overview of mental health and behavioral treatment options for people with TSC.
Neurologist Elizabeth Thiele explains that other parts of the body, such as teeth and bones, can be affected by TSC.
Neurologist Elizabeth Thiele explains that seizure disorders are very common in people with TSC.
Neurologist Elizabeth Thiele discusses the treatment options that are available for TSC-related seizures.
Dermatologist Joop Grevelink provides an overview of how TSC can affect the skin.
Genetic counselor Penelope Roberts explains what families can expect to learn during a genetic counseling session.
Neurologist Elizabeth Thiele talks about the importance of integrated care throughout an individual's life.
Psychiatrist Nicole Danforth explains that connecting with others can help TSC families feel less isolated.
Genetic counselor Penelope Roberts explains that when inherited, the severity of TSC's symptoms cannot be predicted.
Psychiatrist Nicole Danforth explains that it's important for parents to take time for themselves and each other.
Psychiatrist Nicole Danforth discusses the importance of parents preparing to talk with children about TSC.
Psychiatrist Nicole Danforth explains the importance of educating and nurturing siblings who do not have TSC.
Psychiatrist Nicole Danforth explains that children with TSC benefit from structure and consistency at home.
Neuropsychologist Amy Morgan provides basic information on how parents can talk with their children about TSC.
Neurologist Elizabeth Thiele talks about the advances in science that have led to clinical drug trials for TSC.
Forty-year-old Brad's most troubling symptoms of TSC are cognitive limitations and mental health and behavior issues.
Jacob was diagnosed with TSC at five months old. Shortly after diagnosis he began having a serious type of seizure known as infantile spasms.
Thirteen year old Danica is mildly affected by TSC. Her most recognizable symptoms are her angiofibromas.
Michael is severely affected by TSC. For most of his life he has had seizures that have been difficult to control.
The diagnosis of Steve's sister Amy led to the diagnosis of many other family members spanning three and possibly four generations.
Troy is a senior in high school. His seizures have had a serious impact on his ability to learn.
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