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Influential Factors for Disclosing a Tuberous Sclerosis Complex Diagnosis to Romantic Partners
Laura Gorecki1, Syed Hashmi2, Jenny Do3
1The University of Texas MD Anderson Cancer Center UTHealth Houston Graduate School of Biomedical Sciences, Houston, Texas.
Pediatric Neurology
|August 14, 2025
Summary
Individuals with Tuberous Sclerosis Complex (TSC) often find disclosing their diagnosis challenging in romantic relationships. Support is needed to help navigate these psychosocial aspects and improve quality of life.
Area of Science:
- Genetics
- Psychosocial Health
- Relationship Studies
Background:
- Tuberous Sclerosis Complex (TSC) is a genetic disorder causing tumors in multiple organs.
- Individuals with TSC experience unique health and quality-of-life challenges.
- Disclosure of TSC diagnosis to romantic partners presents psychosocial hurdles.
Purpose of the Study:
- To examine disclosure patterns and influencing factors for adults with TSC in romantic relationships.
- To identify challenges and facilitators in disclosing TSC diagnosis.
- To inform clinicians and the TSC community for improved support.
Main Methods:
- Survey of independent adults diagnosed with TSC.
- Data collection on demographics, disclosure factors, relationship experiences, and illness perception.
- Analysis of patterns and factors influencing diagnosis disclosure.
Main Results:
- Increased relationships correlated with higher disclosure probability and shorter disclosure time.
- Ethical obligation (81%) was a key disclosure factor; fear of rejection (69%) a key nondisclosure factor.
- 81% found disclosure challenging; TSC impacted dating desire (64%) and acted as a barrier (70%).
Conclusions:
- Facilitated discussions and psychosocial support are crucial for TSC individuals regarding relationship disclosure.
- Enhanced support can positively influence disease management and overall quality of life.
- Addressing disclosure challenges is vital for the TSC community's well-being.
Keywords:
DisclosureGenetic counselingNondisclosureRomantic partnersRomantic relationshipsTSC-associated neuropsychiatric disorders (TAND)Tuberous sclerosis complex (TSC)More Related Videos
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