Study reveals stigma causes more distress than disease itself

The stigma of having alopecia causes more depression and anxiety than the disease itself, new research has found.

The study, led by King's College London is the largest of its kind and published in the British Journal of Dermatology, found that the impact on the quality of life on people with alopecia is determined by the negative perceptions and stigma associated with having the illness.

Supported by an academic research grant by Pfizer, the study surveyed 596 adults with alopecia areata and found that over 80% reported that they have symptoms of anxiety or depression.

Over 50% felt embarrassed about their condition and more than one-third of patients reported problems with their usual activities such as work, study, housework, family relationships or leisure activities.

The research found that those with more positive perceptions of the disease had lower anxiety symptoms.

Alopecia areata is a complex autoimmune condition, where a person's immune system mistakes their hair follicles as a foreign body and attacks them. 

It often starts with isolated patches of hair loss, commonly in one or more coin-sized (usually round or oval) patches on the scalp and/or across the body. In severe cases, it can progress to complete loss of scalp hair (alopecia totalis) or total body hair loss (alopecia universalis).

It is thought that over 2% of UK population will be affected at some point in their lives by the condition but the paper authors emphasize that it is still often not taken seriously as a medical condition and treated as 'cosmetic'.

The researchers hope that by assessing patients' illness perceptions and stigma in routine check-ups can enable health professionals to better understand the impact of the illness. Implementing appropriate interventions early can then help target negative perceptions and reduce stigma in order to help patients cope better.

The team are now launching the global Alopecia+us study which is funded by the Pediatric Dermatology Research Alliance (PEDRA)and supported by King's Health Partners. The research aims to understand the real-life impact of adolescent alopecia on the young sufferer and the family.

Dr Christos Tziotzios, lead author, Consultant Dermatologist and adjunct Senior Lecturer at St. John's Institute of Dermatology at King's College London, said: "Alopecia can significantly affect an individual's quality of life, affecting not only their physical appearance but also their self-esteem and overall mental well-being.

Despite this, it is a condition that is often overlooked by healthcare professionals. By identifying the underlying causes of poor mental health in individuals with alopecia, we can provide earlier and more targeted support. We are now hoping to research the impact of alopecia on adolescent patients and their families via the global collaborative Alopecia+us study and very much hope for as many participants to come forward and contribute."

Dr. Christos Tziotzios, King's College London

Dr Lorna Pender aged 41 and from York, is an ex-NHS doctor and medical affairs professional who participated in the study.

She was first diagnosed with alopecia areata when she was eight years old and as a result describes herself as becoming "very shy, socially withdrawn and really disliking my appearance; believing that the hair loss was my fault."

As her alopecia worsened throughout her teenage years, she describes how this led to a severely adverse impact on her mental health. She withdrew from socializing, swimming, orchestra and developed eating disorders and agoraphobia."

She describes how in her working life "alopecia has severely negatively impacted my mental health, and I lost my clinical medical career in the NHS as a result." 

She goes on to describe her experience of trying to access support when she lost every hair on her body, face and scalp in 2019. "I spent four years trying to navigate to an alopecia expert in the NHS who would entertain having a high-level scientific consultation with me, and two dermatologists in Yorkshire whose response was indifference and indignance that there was nothing they could offer me. Importantly there was no focus on my mental health. "This was traumatizing to experience, making further self-advocacy even more challenging. If it had not been for a national alopecia expert in London answering my emails, I would not still be here."

She goes on to reflect on her experience, saying that: "If I, a medical doctor struggled to access alopecia expertise, and yet still have no NHS-provided psychological support, how must the entire alopecia community continue without alopecia expertise and psychological support inclusion in the standard of care and clinical guidelines for alopecia?

"This is exactly why Alopecia + me research is vital for driving this paradigm shift in the way dermatology and alopecia care incorporates the person living with the psychological impact of alopecia. As we see in this research, this is not linked to alopecia severity, demonstrating how psychological support is vital for all people with alopecia."