Coping with ED

Being diagnosed and learning to live with a genetic disorder can cause social, emotional and financial stress.  It often requires a great deal of adjustment to outlook and lifestyle.  A person who is an adult when an Ectodermal Dysplasia syndrome is diagnosed may feel angry or afraid.  There may also be concerns about passing the disorder to future generations or about its relationship and career implications.

The parents and siblings of a child diagnosed with an ED syndrome may feel sadness, anger and guilt. It is important for parents to know that nothing that they did caused the gene to mutate.  Parents may be concerned about the genetic implications for siblings or have questions about the risk to future children. Brothers and sisters of an affected child may also feel guilt or even jealousy of the extra attention that the affected sibling gets due to the disorder.

Some children with an ED syndrome are advised to restrict their activities. This may require a lifestyle adjustment that may be hard for a child to understand or accept.

For both children and adults, appropriate medical care, accurate information and social support are key to living with the condition.  Genetic counselling may also be helpful in understanding the disorder and its potential impact on future generations.