Epilepsy patient resources

Doctor using a digital tablet to discuss a brain scan during a consultation in her office

Living with epilepsy—whether it affects you or someone you love—can be challenging to navigate. Seizures have a significant impact on every aspect of daily life, affecting physical abilities, social interactions, and emotional well-being. Addressing these complicated challenges will help to promote a holistic well-being and quality of life. 

At Penn Medicine’s Comprehensive Epilepsy Center, we’re here to help with resources and programs that provide care and support through your life with epilepsy.  

Transition of Care Program for pediatric to adult epilepsy 

Most people with epilepsy first have seizures in childhood. The transition from pediatric epilepsy care to adult care starts around age 18. The move away from trusted doctors and other care team members can be stressful for some young people. Penn Medicine’s Transition of Care Program helps to make this change as smooth and comfortable as possible.  

Our staff members work with the referring pediatric provider to match adolescents with the best adult care provider for them. We schedule the first visit with the new doctor and a six-week follow-up appointment with a nurse practitioner.  

During the initial session, your new doctor reviews your medical history and plan of care with you and your family and takes time to answer questions and address concerns. The doctor may perform an exam. 

At the six-week visit, the nurse practitioner discusses the differences between pediatric and adult care. They also make sure you and your family members are comfortable with your new provider and care plan.  

Penn Medicine has established a program with Children’s Hospital of Philadelphia (CHOP) to transition children with tuberous sclerosis complex (TSC) to adult care. TSC is a condition that causes epilepsy and affects other organ systems.  

Epilepsy Pregnancy Pathways Program 

Seizure risk may increase during pregnancy, so pregnant women with epilepsy require more frequent monitoring. Women with epilepsy who are pregnant or considering pregnancy may join Penn Medicine’s Epilepsy Pregnancy Pathways Program.  

Nurse practitioners and a doctor with expertise in epilepsy lead this program. We work with your obstetrician and epileptologist to ensure the highest quality care for both you and your baby while keeping your seizures under control.  

The Epilepsy Pregnancy Pathways Program consists of four visits. You will have one visit during each trimester of pregnancy and the last visit six weeks after delivery. After this last visit, you will return to the normal schedule of follow-up visits with your regular provider.  

Epilepsy Genetics Program 

Some forms of epilepsy have a genetic component that may affect treatment or disease progression. Your epilepsy specialist may refer you to our Epilepsy Genetics Program if:  

  • You have a family history of epilepsy. 
  • You are concerned about passing epilepsy on to your children. 
  • You have epilepsy along with other neurological symptoms, intellectual disabilities, or movement disorders. 

Initially, you meet with one of our genetic counselors to discuss genetic testing. We will collect your DNA from a blood sample or a swab of cells and saliva from the inside of your cheek. When the results are ready, you meet with the geneticist again to discuss the findings and what they mean for you.  

Our Epilepsy Genetics Program accepts referrals from within and outside Penn Medicine.  

Healthy living with epilepsy

The right treatment, whether that is medication or surgery, is critical for living well with epilepsy. But managing other factors can help you achieve the best health possible and keep you safe.

People with epilepsy should work on health habits, including:

  • Avoiding seizure triggers, such as flashing lights
  • Avoiding use of alcohol and recreational drugs
  • Eating a well-balanced diet without skipping meals
  • Getting enough sleep
  • Reducing stress and anxiety
  • Staying hydrated
  • Taking steps to prevent illness by frequently washing hands, avoiding contact with sick people, and getting a flu shot every year

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