Recently, our Research Manager Niels attended the ‘Hair, Skin & Psyche’ symposium in London, hosted by Skin of Colour Training (SOCT) UK and Psychodermatology UK.

During the day, doctors passionate about making dermatology more inclusive explained the challenges people with skin of colour face and gave tips to other doctors in attendance on how best to care for them.

What are the challenges?

Throughout the day, dermatologists outlined how people with skin of colour often face additional challenges in accessing healthcare, are less likely to seek and receive mental health treatment, and have worse health outcomes. SOCT UK was set up to change this: to make dermatology more inclusive, so all patients can have access to the best care.

In the first half of the day, we heard about the psychological impacts of skin conditions, and how someone’s culture and ethnic background may affect their experience. Dermatologists described how various skin conditions, such as eczema, vitiligo, and alopecia areata are more common in people with skin of colour. Symptoms persist longer, and as a result have a bigger impact on people’s lives, including higher levels of anxiety and depression. When inflammation is measured in the blood, this is also typically higher than in people of White ethnic backgrounds.

Access to healthcare

But when it comes to accessing healthcare, people with skin of colour wait longer and are given older drugs – they are less likely to receive advanced treatments. One of the speakers presented data from a study on a psychiatric skin condition (delusional infestation). This found that Black patients waited 12 months longer, and received psychological treatment 14 months later, compared to White patients, despite no differences in baseline severity.

It was pointed out that questionnaires like the Dermatology Quality of Life Index (DLQI) are Western-centric. These questionnaires measure how someone’s condition impacts them; the higher the score, the bigger the impact the condition is having on quality of life. However, when people have a poorer understanding of English, their scores are lower, meaning the life impact of their skin condition is underestimated. The recommendation was that when there are language barriers, people should get more time during their consultation. This can help to ensure all the questions asked, and information given by doctors, are fully understood.

Cultural sensitivity

With people from so many different backgrounds living in the UK, dermatologists expressed that it can be hard to be sensitive to everyone’s cultural norms. It’s important that doctors speak to patients and understand what is important to them. Cultural beliefs may mean that people want to use traditional or alternative medicine, and there should be a conversation around how this can be managed alongside the care provided by their doctor. Some may be using products on their skin that could be causing harm, such as skin-lightening products, or other products bought abroad with unknown ingredients. Sometimes, decisions are made collectively or by elders, rather than by the person themselves. There can also be discomfort around being treated by a person of the opposite sex, so people should be given the option to have a chaperone in the room.

Complicating things further, the speakers shared that in people with skin of colour, there can be a distrust or even fear of doctors and medicine. Past traumas, high maternal death rates, and lack of representation, can mean that people hold a belief that the system is not set up to help them. They may not be engaging with the healthcare system at all. Often, people want ‘natural’ treatments, because of a fear of side effects from medicines. They may have faced long waiting times, or have been dismissed in the past, and when they are less likely to see someone that looks like them on the other side of the desk, it can be really hard to have trust in the system.

Hair loss

In the second half of the day, there was a focus on hair conditions. We know that people with skin of colour are at a higher risk of developing several types of hair loss:

• Central centrifugal cicatricial alopecia (CCCA) almost exclusively affects women of African descent. This scarring form starts at the top of the head and spreads outwards.
• Acne keloidalis nuchae (AKN) is seen more often in people of African, Carribean and Asian descent. This can be caused by shaving or haircuts close to the skin, and wearing tight helmets, and typically results in scarring on the back of the head and neck.
• Dissecting cellulitis of the scalp (DCS), and folliculitis decalvans (FD), also scarring types, are often seen in men of African descent.
• Traction alopecia is also seen more frequently in people with skin of colour. Pulling on the hair by tight hairstyles, can in the long-term lead to permanent scarring. However, when hair is allowed to relax, it can recover. It’s important that people are educated on how to avoid putting too much strain on their hair.
• Alopecia areata, a non-scarring autoimmune condition, is more common in people with skin of colour.

It can be difficult to diagnose the exact type of hair loss, and misdiagnosis is more common in people with skin of colour. This is concerning, as people may not receive the right treatment, and scarring forms lead to permanent damage if they are not addressed early. It is also more common for people with skin of colour to experience more than one type of hair loss. For example, people with alopecia areata (AA) may also have lichen planopilaris (LPP). For people with frontal fibrosing alopecia (FFA) and skin of colour, it is more common that they also have brown/grey oval-shaped marks on the skin, a condition known as lichen planus pigmentosus.

For doctors, it’s important to know what the scalp and hair look like in healthy skin of colour, before they can know if there’s something wrong. In people with Afro-textured hair for example, hair follicles are flatter in shape and more spread out, hair is often more dry and more prone to breakage and also grows more slowly. Many skin conditions look different in various skin types, and so projects like SkinDeep and professional societies like PCDS and SOCTUK have started building image banks to show this diversity. Educational materials for doctors are now being updated to better reflect various skin types.

What else needs to happen to improve things?  

Importantly, people want their story to be heard, even though they often know that options for treatment can be limited. An open conversation and a show of understanding can mean the world of difference. People should also be managed as a whole: how is the condition affecting their studying, work, sleep, relationships? There is growing evidence that stress is linked to skin inflammation, so it’s important people receive support with these psychological aspects, alongside treatment of the skin itself.

For hair, we know that this plays such an important cultural role, as it is linked with identity and religion. There can be a lot of stigma around hair loss, making it hard for people to talk about with their friends and family. For people affected by hair loss, it is important to know that they are not alone. At Alopecia UK, we want to be there for all people affected by hair loss, from all backgrounds. We are working on better understanding the diverse needs of people from various cultural backgrounds, so that we can improve our support for all people affected by alopecia.

Research also needs to be more inclusive. It needs to be done 'by' and 'with' the people and communities the research is for, rather than 'about' them, as has happened in the past. By involving the 'experts by experience', those affected by hair loss, from an early stage, researchers can build relationships on trust and transparency. Only by working together and giving people a meaningful say in how research is done, can we start to overcome barriers and improve the representation of people with skin of colour.

Alopecia UK has a Lay Research Panel, which is a diverse group of people affected by hair loss. They work directly with researchers to help them shape their studies. If you are interested in helping shape alopecia research, please get in touch via [email protected]. 

Image: Alopecia UK Research Manager Niels (left) is pictured with Dr Syreeta Daw (middle) and Dr Marisa Taylor (right).