The appearance of ichthyosis may cause those affected to become self-conscious. They may feel depressed, have low self-esteem, and/or not want to be seen. The pain and itching associated with ichthyosis may disrupt sleep or everyday activities, causing irritability and poor school/work performance. To help with any emotional problems, therapy groups or individual therapy sessions may be attended. The support of family and friends is helpful as well. Following proper self-care and routines to alleviate symptoms is crucial to optimizing quality of life when living with ichthyosis.
Reflections: Christine's Story
Christine Butler is a retired public servant who now serves as a municipal councillor in her hometown of Conception Bay South, N.L. She is the Co-Chair of the CSPA Board of Directors and additionally volunteers for organizations in her community concerning children, families and mental health/suicide awareness. Christine's favourite role is being "Nanny Christine."
Christine was born with a rare skin disease called recessive congenital ichthyosis erythroderma (CIE). When she was officially diagnosed at age 21 she started on the road of learning all things ichthyosis. “I don’t know that I can say I was happy to be born with this rare skin disease, but I do know … that having this disease has made me strong, has made me do things … has made me reach and go beyond goals I might not have otherwise. I have grown to be a confident woman who has had many achievements in family, work and the community."
Christine freely shares her story of living with ichthyosis through social media forums around the world in an effort to support other skin patients.
If you would like to share your personal patient story, please contact This email address is being protected from spambots. You need JavaScript enabled to view it..
