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Abstract
This study investigates the mental health challenges across the Porphyrias through focus group discussions. The primary aim was to identify emotional and psychological issues, coping strategies, and support needs. Both groups reported significant mental health struggles. Recommendations include enhanced mental health support, mentorship programs, and community-building initiatives to improve the quality of life for those affected by porphyria.
Methods Focus groups were conducted for individuals with Cutaneous Porphyria on May 13, 2024, and Acute Hepatic Porphyria on June 13, 2024. Discussions covered mental health struggles, coping strategies, and the impact of the disease on daily life. The sessions were transcribed and analyzed to identify recurring themes and key takeaways.
Results Key Common Challenges:
Mental Health Struggles: Anxiety, Isolation and Abandonment, Loss of Identity, Frustration and Grief, Guilt and Shame
Impact of the Condition: Emotional Toll of Clinical Trials, Unpredictability, Medical Trauma, Invisible Disease, Self-Advocacy
Varying Themes Reported among Porphyrias:
Cutaneous Porphyria: Depression and Therapy, Building Emotional Walls Adjusting After Setbacks: Balancing Needs During Reactions, Support for Families.
Acute Hepatic Porphyria: Pendulum of Extremes, Grieving Past and Future, Identity and Productivity, Slowing Down, Feeling Out of Control, Lack of Medical Guidance.
Potential Resources
Several resources were discussed as potential solutions:
Mental Health Professionals
Support Groups
Educational Materials
Financial Assistance Programs
Community Building
Next Steps
To address the identified needs and challenges, the following steps are recommended:
Develop and Implement Resources
Enhance Support Systems
Advocacy and Education
Financial Support
Community Engagement
Conclusion The focus group discussions with individuals across the Porphyrias reveal overlap in their mental health struggles, coping strategies, and advocacy needs. However, the differences in specific challenges highlight the necessity for tailored resources and separate discussions and community-building initiatives for each group. Both communities emphasized the importance of self-compassion, robust support systems, and practical resources to manage their conditions effectively.
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