Diagnosing And Treating Angelman Syndrome

Coping And Support Groups

Living with a disease like Angelman syndrome isn't easy for the patient or their family and friends. Parents may feel alone. They may feel they have failed somehow, although it's certainly not their fault. Angelman syndrome is rare. It's highly unlikely parents of children with this disease know anyone else who has it, which only adds to feelings of isolation. However, numerous coping and support groups are available online. Some provide transportation, including by air, for patients who live far from medical facilities capable of treating Angelman syndrome patients. Others provide service dogs, and some help with obtaining medical insurance while others provide wearable tracking devices in case an Angelman syndrome patient wanders off. Some websites recommend products to make life with an Angelman syndrome patient easier. Some groups offer emotional and psychological support for caregivers. Other organizations focus on education and new developments for the disease. All in all, it's clear there is plenty of help available through coping and support groups.