Mental Health & Ichthyosis Resource Library
Crisis Lines
Suicide and Crisis Lifeline for the US: Call or text 988
Suicide hotlines in other countries:k Open Counseling
Crisis line for LGBTQ+ youth in the US: The Trevor Project
Mental Health and Rare Disease Articles
Article: How Rare Diseases Can Affect One’s Mental Health
Article: The Three Pillars of Mental Health
Study: Stigma, Bullying, and Depression in Children with Skin Diseases
Study: Psychological Support for Children and Families Affected by Skin Conditions
Links: Mental Health Resources for the Rare Disease Community
Mental Health Info for Dermatologists
Article: Managing the Mental Health Effects of Skin Diseases
Article: How to Support the Mental Health of Patients With a Rare Disease
Article: Why We Need Research into the Mental Health Impact of a Rare Disease Diagnosis
Mental Health and Ichthyosis
Article: Coping with Ichthyosis
Member Story: Christine Brush
Study:Increased risk of depression and impairment in quality of life in patients with ARCI-lamellar ichthyosis
Journal: Dermatologic Therapy
Publication Type and Date: Cross sectional; January 2021.
Reference: Cortés H, Rojas-Márquez M, Reyes-Hernández OD, et al. Increased risk of depression and impairment in quality of life in patients with lamellar ichthyosis. Dermatol Ther. 2021.
Review:
Increased risk of depression and impairment in quality of life in patients with lamellar ichthyosis: ARCI-lamellar ichthyosis (ARCI-LI) is one of the most severe clinical phenotypes of ichthyosis and is characterized by thick plate-like scales, itch, pain, alopecia (hair loss), and erythema (redness). This disease has been shown to negatively impact quality of life (QoL). In this study, the investigators identified 26 people with ARCI-LI and 26 healthy controls from Mexico and used the Depression Beck Inventory II (DBI-II) and Dermatologic Life Quality Index (DLQI) to assess depression and impairment in QoL between the two groups. The Congenital Ichthyosis Severity Index (CISI) was used to determined severity of ARCI-LI at the time of the surveys. There was a significant difference in DBI-II scores between people with ARCI-LI and healthy volunteers, indicating higher levels of depression in people with LI. When factoring in the severity of ARCI-LI using the CISI, there were no differences in levels of depression or impairments to QoL between mild or severe disease. Those with high levels of depression documented larger impairments in QoL. Although this study had a small number of patients, it highlights the impact that ARCI-LI can have on mental health and to what extent it can impact quality of life, even in mild disease severity. It suggests the importance of mental healthcare in maximizing health and wellbeing in people with ARCI-LI.
Summary:
ARCI-LI is associated with higher rates of depression when compared to healthy controls and has a significant impact on quality of life regardless of disease severity. Mental healthcare is an important aspect of LI healthcare, and there should be regular discussions about mental health and wellbeing.
Mental Health Tools, Apps, & Resources
Nonprofit organization: Mental Health America
App: 7Cups Free online therapy
VIDEOS:
Member Story Dr. Mary Ashley Mercer
Member Story Abigail
Navigating Ichthyosis & Mental Health in the Winter
Yoga Playlist
Childhood with a visual difference
VIDEOS:
30 second mindful breathing video for kids or adults
Mindfulness exercise for kids
Workbook: Acceptance and Commitment Therapy
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