It is difficult to truly gauge both the financial costs and the significant humanistic toll of caring for someone with Dravet syndrome. Prolonged or repetitive seizures diminish quality of life not only for patients, but also for parents and caregivers, who may suffer loss of time from work, loss of employment, increased anxiety, and social isolation, among other negative impacts. However, support structures and effective care options are available to help ameliorate the management of the disease and its comorbidities for caregivers.
We are pleased to announce a new, live video education session for caregivers of someone with Dravet syndrome (DS). On Wednesday, June 30 at 12pm ET, head to RareDiseaseLive to find Caring for a Loved One with DEE and Dravet Syndrome: Harnessing the Power of Knowledge to Enhance Diagnosis, Reduce Seizures, and Improve Overall Quality of Life for All, presented in collaboration with DSF.
This is the first session in a 3-part series, where the panel will examine the care of patients with DS, relate common challenges faced, and share effective strategies to overcome them. Session 1 is split into 3 convenient 20-minute modules:
- Module 1: Resources for Supporting Immediate Relatives of Those Diagnosed with DEEs
- Module 2: Keeping Your Loved One Safe and Preventing Seizures
- Module 3: The First 100 Days and Beyond: Resources for Caregivers, Family, and Friends
This interactive program features real time Q&A, interactive audience polling and a live conversation between a doctor, nurse coordinator and caregiver advocate. Together, the panelists will discuss:
- Identifying resources to help families, siblings, and other relatives cope with the impacts of a DEE diagnosis, including emotional, social, and cost‐related impacts
- Developing safekeeping strategies to reduce risk of harm during a seizure
- Establishing a plan with the health care team to promote neuropsychiatric, motor, and cognitive functions using medication and multidisciplinary approaches
- Prepare for a smooth transition from child to teenager to adult, addressing social and health care needs
- Evaluate treatment options for DEEs with your child’s health care provider
- Understanding the risk of SUDEP related to DS and the key contribution of uncontrolled seizures
- Exploring the impact of newly approved treatment options for DEEs
Speakers will field questions from the audience during the live session or you can send your questions in today.
Caregivers will leave this session with a better understanding of how to manage their patients’ behavioral issues and improve seizure control, find effective tools and resources and navigate conversations and interactions with their patients’ clinicians. Learners will be able to take the first steps toward striking a balance between caregiving, family, and self, and find the knowledge, support, and encouragement they need to ensure their patients receive the best possible care.
Register now to save your seat for the live presentation or to watch on-demand later.