This was a virtual event with registered ISG members in the company of Andrew Thompson [Professor of Clinical Psychology (Hons.), Programme Director (DClinPsy)] of Cardiff & Vale University, and Olivia Hughes (PhD Student) on Sunday, 17 October 2021.

Mandy Aldwin-Easton and Sarah Griffiths-Little of the ISG opened the call at 5.00pm as arranged. ISG members who had registered to join the call were introduced to Professor Thompson and Olivia Hughes who had both kindly offered their time to share their expertise with us and to help answer questions and address any concerns our members might have. Sue Corbett (ISG Secretary) sat muted taking notes.

Professor Thompson (Andrew) told us that he had worked in the NHS for 30 years and that he himself has some experience with skin conditions as he has severe eczema in his hands and so, too, does his daughter. Olivia Hughes has psoriasis and is interested in developing a psychological resource for helping those with skin conditions.

Andrew’s aim was to share some social, physical and emotional concerns that may develop with ichthyosis:

• Anxiety (especially in social situations)
• Frustration (at symptoms and other people)
• Lowered mood
• Loss of interest in hobbies, work and/or relationships
• Restlessness and/or difficulty concentrating
• Discomfort and itching

Andrew wanted to make it clear that people with ichthyosis may not necessarily suffer any of the above issues, and these symptoms may disappear over time. He also wanted to raise hope that if you are struggling with such symptoms, help is available.

Personal Experiences

Sarah Griffiths-Little of the ISG was born a Collodian baby and has Lamellar ichthyosis. She shared some of her experiences explaining that, as a teenager, she felt she was in denial about her condition. She developed a number of coping techniques and is now confident in her skin. Sarah’s secret to coping? Adopting a ‘superhero’ pose, with hands on hips. Indeed, she has found that on a bad skin day, taking on a ‘Wonder Woman’ stance has really helped her. Also, on a bad day she writes down 5 positive things about herself – ‘I AM ….’ – to remind herself that her poorly skin doesn’t define the person she is. At school, because Sarah’s hands are the most affected part of her body, she would refuse to hold hands with anyone, instead insisting they hold her sleeve. Having such a serious skin condition Sarah always felt ‘different’, but would pretend to be ‘normal’. Being more open and talking about her condition has helped Sarah enormously.

Mandy Aldwin-Easton of the ISG has Netherton Syndrome – she also shared some of her experiences. Mandy, although self-confident amongst family and friends commented that she finds it difficult talking in detail about her condition to people she doesn’t know well. Mandy is aware that different lighting shows her skin in different ways – for example the lighting on the London Underground is one of the worst and can elicit stares from fellow travellers. Indeed, on one such occasion when she was travelling with Sarah Griffiths-Little, she noticed a lady’s constant stare at the two of them so annoying that she presented an ISG Ichthyosis Awareness Card. The result of this constructive action was that the lady read the card, nodded and smiled back, having now been educated. It was an extremely positive and empowering outcome. Mandy also described starting new personal relationships as challenging and always pondered on when was the right time to talk more about her condition. However, it appears the sharing of more detail didn’t always deter her admirers and she is now very happily married (to a very patient husband).

Advice

Andrew asked everyone to consider how much of their concern and anxiety was for them. One issue that arose during the discussion was of relationships and intimacy. For some people this is a real worry and can trigger inner battles, for example in relation to just how much to disclose on a first date. Indeed, these concerns could sabotage a relationship developing, and where this is the case taking the plunge to talk to a healthcare professional can be the first step in getting much needed help.

Andrew advised everyone to step back and take a look at themselves in their minds-eye, and to consider how they see themselves and how that is affecting their mood. He acknowledged how hard it is to change thoughts and suggested that it wasn’t always about trying to think positively, but was rather about moving towards self-acceptance via developing greater self-compassion towards oneself. He also spoke about the need to sometimes manage other people poor attitudes and actions towards ichthyosis, and he described some simple strategies for better managing other people.

Andrew recommended seeking support from peers as well as from healthcare professionals. He suggested that some self-help strategies can be useful such as those associated with mindfulness. Developing mindfulness is not straight forward and involves using techniques to help develop moment by moment non-judgemental attention.

Olivia (PhD student) took everyone through a simple breathing exercise that can be used to aid the development of mindfulness but also be used to gain control over stress related over breathing. These 2 minute exercises can be really helpful in calming your anxiety, although it can take a lot of practise to deal with a really difficult and stressful situation, so practice in the first instance at times when you aren’t stressed.

Andrew explained that helping others to understand ichthyosis can be vital in managing intrusive reactions and in building confidence. Deciding how you are going to deal with the stares of strangers in advance can be helpful. For example, you could form an advance plan of how to answer difficult questions or/and decide to count to ten, change the subject, and if necessary decide that this person is not worth spending more time with and walk away. It is hard to do this, so pretending you’re an actor and practising can be helpful. All this will help towards building self-confidence.

Questions from our members:

Q1. One member has a young teenage son whose skin condition isn’t obvious from his face, but when showing any part of his body he can be mortified at others’ reactions – he can freeze on the spot. He appears to be in denial, but is now having sessions with Changing Faces and so is having help with accepting his condition.

A1. Andrew recommended that the young lad be encouraged to talk about his condition. He cannot not have it. He cannot not worry. Andrew recommended trying to assist him to focus on.

things about himself that he is more positive about. In discussing his condition he might prefer to try to be an actor, thereby talking about himself in the third person.

Q2. Another member has a 6 year old son with X-Linked ichthyosis. As well as the skin condition he also has some sensory issues and high anxiety levels leading to Obsessive Compulsive Disorder. It doesn’t help that this 6 year old has never met anyone else with his difficulties,

A2. Andrew recommended seeking help through the GP and specialist NHS CAMHS services; but also joining ichthyosis uk to find and build relationships with others that understand through having personal experience. Practising family mindfulness exercises whether colouring or breathing can be a great way of trying to reduce collective family stress .

Q3. Dealing with the physical issues around the condition – skin shedding etc. How is it possible to remain positive in such situations?

A3. Andrew suggested having pre-prepared answers to awkward questions. Check yourself and your attitude towards yourself and begin to think how you would respond to someone else that you care for. Others present also offered advice about types of clothing,

NOTE – other members in this group shared the terminology they use when confronted with these embarrassing situations – Angel dust; snow flakes

Q4. One adult sufferer in the group has found that one of the side effects of a medication she has been using for a number of years has caused character distortion and ultimately led to deep depression.

A4. Andrew suggested that side-effects should always be shared with a healthcare professional.

Q5. How to deal with the comments of other children in school?

A5. Give your child permission to talk; ask the school for advice; speak to Changing Faces (see contact information below); reassure your child; meet other children outside of school; help them to grow their pride in themselves.

Q6. How can a parent deal with the child sufferer’s aggression towards unaffected siblings, behavioural issues? Also envy, from both affected and non-affected siblings due to the amount of attention the child sufferer is given for creaming, bathing, etc?

A6. Andrew’s advice was to try spend dedicated time with each child. Behavioural reward systems like star charts can be useful for supporting the development of good behaviour. Sharing stories and involving all siblings in events such as those run by ichthyosis Uk can also be useful.

Q7. When mixing with the public, should sufferers dress for themselves, or hide their skin? Should they wear clothing that exposes areas of their skin? Or cover up as much skin as possible?

A7, Andrew advised that we should (where possible) dress to please ourselves, but to be prepared for questions. Sufferers, like non-sufferers should LIVE THEIR LIVES!

Q8. Why me? This is a question that all sufferers will ask, probably at an early stage.

A8. There is no easy answer to this question. Listen to the child, allow them to talk about their concerns about their condition. It’s always good to talk. Try to connect the child into the local community.

Andrew ended by advising all sufferers and parents of sufferers to not be shy about asking their GP or dermatologist for support.

Did you know that, in the UK, you can self-refer to psychological services such as increasing access to psychological therapies services (IAPT for short!). Whilst, you don’t have to go through your GP, it is always useful to keep them updated and to be open about your feelings in consultations with both GPs and dermatology healthcare professionals.

With all questions answered, Mandy and Sarah thanked both Professor Andrew Thompson and PhD student Olivia Hughes for their time – they had both, very generously, stayed on the Zoom call far longer than the anticipated hour.

With Sunday evening bath time duties on people’s minds we found a small number of our members saying goodbye. A few others remained for a chat and to share some helpful miscellaneous tips they have found on their journeys through life with ichthyosis. Everyone declared they had enjoyed the meeting and found the advice offered really helpful.

Did you miss out? Don’t worry! Mandy has promised to set up another session for members who weren’t able to register for this session due to its high popularity. Numbers of participants need to be kept to 25 maximum in order for everyone to be able to have their voice heard. Keep checking our social media pages for news of the next session.

You may find the following organisations helpful:

For the Free Mindfulness Project, where you will find many free to download resources https://www.freemindfulness.org

For support with dealing with visible differences https://www.changingfaces.org.uk

For advice on living with a skin condition https://www.bad.org.uk/for-the-public/skinsupport and www.skinsupport.org.uk

To find an NHS Psychological Therapies Service https://www.nhs.uk/service-search/find-a-psychological-therapies-service/