Calling all caregivers of children age 14-26 diagnosed with AE

June 23, 2020

Hashimoto’s Encephalopathy Streat Alliance (HESA) and AE Alliance are teaming up to support you and your child with the transition from pediatric to adult AE care.

Moving from pediatric to adult care in the health care system can be a complex and emotional process, especially when your child has a rare disease. A few key things to think about are: insurance coverage changes, handling decision-making and guardianship, and choosing the right adult physician.

For the child, early adulthood is a time of discovering what it means to be independent, while managing the disease, frequent hospitalizations, fatigue, or disease flares. For the caregiver this phase means helping your child gain that independence, but this is not easy when your child has AE, and you have to manage a complex care program while being on an emotional rollercoaster.

We want to learn more about your experience, so we can better support you and your child. If you have a child diagnosed with AE in the age of 14 – 26, please take a moment to fill out this short survey.

Transitional Care Survey: