People with genetic haemochromatosis are at greater risk of suffering with poor mental health than the general population.

Key findings :

  • In this study, we found 65% of respondents with genetic haemochromatosis experienced some level of anxiety and 79% experienced some level of depression.
  • Experiences of mental health issues vary by genetic variant and biological sex. The genotype that experienced anxiety and depression the most was type 1 compound heterozygous.
  • Men had a greater proportion of moderate to severe levels of depression than women.Reaching treatment maintenance had no impact on the mental health of the majority of respondents as 77% indicated that their mental health was about the same as pre-maintenance.


Our results may help healthcare practitioners focus interventions on patients with genetic haemochromatosis that are at greatest risk of mental health issues, especially in the 12 months following diagnosis.

About the Authors

Salma Ali is a bioinformatician from University of Birmingham. She undertook this study for Haemochromatosis UK as a Health Data
Research intern under the 10k Black Interns programme.

Neil McClements is Chief Executive of Haemochromatosis UK.