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Sexual function, intimate relationships and Friedreich ataxia

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Abstract

Background

Sexual dysfunction (SD) is reported in neurological conditions similar to Friedreich ataxia (FRDA). Anecdotally individuals with FRDA report SD including erectile dysfunction and altered genital sensation. Understanding SD in FRDA assists health professionals identify SD issues and improve healthcare for individuals with FRDA.

Objective

To quantify if, and to what extent, people with FRDA experience challenges with sexual function and intimate relationships as a result of primary (genital function), secondary (physical) and tertiary (psychosocial) dysfunction.

Methods

An online purpose designed anonymous questionnaire explored SD and intimate relationships. Invitations to participate were sent to individuals with FRDA aged 18 years and over on the Ataxia UK and Friedreich Ataxia Research Alliance databases. Date collection occurred between January and July, 2017.

Results

One-hundred-and-seventy-nine adults with FRDA participated, of which 107 reported current or previous sexual activity. Erectile dysfunction was reported in 57% (20/35) of males, inadequate vaginal lubrication interfering with sexual responsiveness was reported in 57.7% (26/45) of females, and 47% (51/107) reported reduced genital sensation. In addition, 88% (94/107) reported problems moving their body during sexual activity and 73% (78/107) reported reduced confidence about their sexuality due to FRDA. A significant negative relationship was shown between younger age of disease onset and SD.

Conclusion

This study confirmed FRDA impacts sexual functioning, sexual satisfaction and the capacity to form intimate relationships. Understanding the nature and extent of SD is critical to developing interventions and recommendations designed to enhance sexual function, sexuality, and intimate relationships for individuals with FRDA.

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Data availability

The data that support the findings of this study are available from the corresponding author upon reasonable request.

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Acknowledgements

The authors wish to thank Ms Jen Farmer, Chief Executive Officer, Friedreich Ataxia Research Alliance (USA) and Dr Julie Greenfield, Ataxia-UK for their assistance in distributing information regarding the survey. The authors are grateful to all respondents to the survey for their time and insightful comments. We would also like to acknowledge the Friedreich Ataxia Research Alliance (USA) for their support of our work.

Funding

Associate Professor Louise Corben is supported by a Medical Research Futures Fund Next Generation Career Development Fellowship under Grant APP1143098.

Author information

Authors and Affiliations

  1. Bruce Lefroy Centre for Genetic Health Research, Murdoch Children’s Research Institute, Royal Children’s Hospital, Parkville, VIC, 3052, Australia

    Louise A. Corben, Louise M. Crowe & Martin B. Delatycki

  2. School of Psychological Sciences, Monash University, Clayton, VIC, Australia

    Louise A. Corben & Martin B. Delatycki

  3. Department of Paediatrics, University of Melbourne, Parkville, VIC, Australia

    Louise A. Corben, Alice Marks, Louise M. Crowe & Martin B. Delatycki

  4. Melbourne School of Population and Global Health, University of Melbourne, Parkville, VIC, Australia

    Alice Marks

  5. State University of New York at Albany, Albany, NY, USA

    Mireille M. Hermans

  6. Erasmus University Medical Center, Rotterdam, The Netherlands

    Mireille M. Hermans

  7. Clinical Sciences, Murdoch Children’s Research Institute, Parkville, VIC, Australia

    Louise M. Crowe

  8. Victorian Clinical Genetics Service, Parkville, VIC, Australia

    Martin B. Delatycki

Authors
  1. Louise A. Corben
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  2. Mireille M. Hermans
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  3. Alice Marks
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  4. Louise M. Crowe
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  5. Martin B. Delatycki
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Contributions

LAC was responsible for the conception, organisation and execution of the research study, design and execution of the statistical analysis and writing of first draft of the manuscript. MMH was responsible for the organisation and execution of the research study, and review and critique of the manuscript. AM was responsible for the organisation and execution of the research study, and review and critique of the manuscript. LMC was responsible for the organisation and execution of the research study, review of the statistical analysis and review and critique of the manuscript. MBD was responsible for the conception, organisation and execution of the research study and review and critique of the manuscript.

Corresponding author

Correspondence to Louise A. Corben.

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Conflicts of interest

None to report.

Ethical approval

This study was approved by the Royal Children’s Hospital, Victoria Australia, Human Research Ethics Committee (HREC 35276 A).

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Corben, L.A., Hermans, M.M., Marks, A. et al. Sexual function, intimate relationships and Friedreich ataxia. J Neurol 268, 1088–1095 (2021). https://doi.org/10.1007/s00415-020-10258-y

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  • DOI: https://doi.org/10.1007/s00415-020-10258-y

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