As every year, World Mental Health Day is an opportunity to highlight the importance of mental health – an opportunity to reflect on ways to improve knowledge, raise awareness and promote action on all aspects of mental health. This year’s day focuses on the need to ensure the highest attainable level of mental health as a basic human right for all people. As highlighted by the World Health Organization (WHO), this includes the right to protection from mental health risks, the right to accessible, acceptable and quality care, and the right to freedom, independence and inclusion in society.

In the EU, poor mental health affects more than one in six people in any given year. In many cases, it has a negative impact on physical health, wellbeing, family, social relationships and employment. Certain groups in society are more at risk of poor mental health; people living with serious chronic or life-threatening conditions – including those living with a rare condition – should be considered as such. Poor mental health may be a ‚hidden‘ but important co-morbidity in these conditions.

Triple the risk of depression in people with a rare disease

A recent investigation has clearly identified mental health as a key issue facing patients with rare diseases and their carers. It found that living with a rare disease can have a „huge impact, including anxiety, stress, low mood, emotional exhaustion and thoughts of suicide“. It also found that „many of the causes of poor mental health reflect issues that are specific to managing a rare disease, and that patients/carers face challenges at many points in their journey from the onset of symptoms“.

In addition, in many cases, patients and carers do not feel taken seriously by health professionals when they talk about the mental health burden associated with their situation. A 2017 survey by Eurordis found that 37 percent of people affected by a rare disease experience unhappiness and depression – three times more than the general population. And, according to the 2021 UN resolution, people with rare diseases and their families live with „greater risk of being disproportionately affected by stigma, discrimination and social exclusion“ and are „disproportionately affected by poverty, discrimination and lack of decent work and employment“.

The link between physical health and mental well-being

There is also evidence to show a link between physical health and mental wellbeing, with a correlation between the severity and complexity of physical health conditions. Psychosocial vulnerability is higher in these populations. Phenylketonuria (PKU) is a specific example of a rare disease where mental health plays a critical role. People living with PKU are unable to metabolize certain proteins in their diet and, if left untreated, can cause severe intellectual disability and neurological, psychological and behavioral problems.

The standard treatment for PKU consists of a strict diet that allows a minimum amount of natural protein per day (equivalent to only one glass of milk), with „normal“ foods strictly forbidden. Obviously, adherence to such a strict and ‚anti-social‘ diet poses serious problems for patients, their families and carers. Few individuals can maintain the necessary dietary control throughout their lives. However, even with good control, there is a higher risk of mood, anxiety and attention disorders throughout life.

If left untreated, PKU can lead to intellectual disability with hyperactive behaviour and autistic traits. Studies also report that people living with PKU are more likely to experience low mood and depression. Children and young people with PKU have problems concentrating, struggle with learning difficulties and also experience anxiety or depression. In addition, 51 per cent describe social exclusion and problematic relationships. Carers or parents of children with PKU also reported significant problems with mental health and general health and negative impacts on social and working life. In addition, people living with PKU commonly reported needing access to psychological and psychiatric services. Psychiatric illnesses are ‚very common‘ in the adult population with PKU.

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A comprehensive approach to mental health in the EU

The European Commission recently published its comprehensive approach to mental health. It called for the development of effective programmes to promote mental health and psychosocial support for people living with a rare disease and for EU coordination to develop and support policies and programmes that enhance the wellbeing of their families and carers.

The World Health Organization has updated its Mental Health Action Plan for the period 2013 to 2030, which aims to promote mental health and well-being for all, prevent mental disorders in people at risk and achieve universal coverage of mental health services.

Let us ensure that these initiatives are truly comprehensive and do not overlook the challenges faced by people living with rare diseases and their families.

Eric Lange, ESPKU                                                           

Gavin O’Donnell, PKU Association of Ireland               

Niko Costantino, Cometa ASME, Italy

Billy Kelleher, Member of the European Parliament

Maria Walsh, Member of the European Parliament

Rosanna Conte, Member of the European Parliament

Tomáš Zdechovský, Member of the European Parliament

Grace o’Sullivan, Member of the European Parliament