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.


Article: Mental Health Matters, by Mikaela Murphy

Mental Health Tools, Apps, & Resources

Nonprofit organization: Mental Health America

App: 7Cups Free online therapy

App: Moodfit mental health tools, trackers, and education

App: Happify games for stress and anxiety

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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