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Herscot Center for Tuberous Sclerosis Complex
2018 Adult Groups for Tuberous Sclerosis Complex patients
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.
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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