You are using an older browser version. Please use a supported version for the best MSN experience.

Living with eczema: ‘I could wake up looking like I’ve done 10 rounds with Tyson’

The i 3 days ago Paul Gallagher

I’m a lifelong sufferer of eczema and atopic dermatitis, having had it from about the age of six months – 35 years of suffering from various severities and fluctuations throughout my life – with so many different factors – environmental, food, stress – triggering things to make my skin worse.

My earliest memory of it is primary school, probably from the age of four or five, when I knew I was different, my skin was different. I found it very difficult to concentrate, kids looking at me, teachers wondering why this pupil can’t sit still or look people in the eye sometimes. It’s often confused with things like ADHD just because of the way it manifests itself.

I’d be on quite a string of medications and still be itching hundreds of times a day, incessantly. It’s horrible, one of the worst and understated diseases you can imagine. A lot of people don’t realise that your skin is actually the largest organ of the body. People might think eczema is just a bit of dry, flaky skin, but it’s significantly more than that. Unless you’ve had it, or live with someone who has severe eczema, people just don’t realise how bad this disease is.

For me, eczema affects my whole body. Where it does really impact me is when it’s on my face, when it’s visible to other people. That’s really hard. You can cover the eczema if it’s on your body and deal with it and over time learn to build resilience to what it is. But if you get a flare up on your face, the skin being red raw or dry or whatever, it’s difficult. It’s probably more psychological really, thinking everyone is looking at you because your skin has flared up. You don’t want to be seen by other people.

Adolescence was also hard. Life became a bit more difficult then because you become even more conscious of your body. There’s no cure for it. I hope in my lifetime there will be other ways to manage it and make life easier.

Happily for James, his wedding day coincided with his skin enjoying a good period. (Photo: James Hardwick) © Provided by The i Happily for James, his wedding day coincided with his skin enjoying a good period. (Photo: James Hardwick)

In summer when it was hot, a lot of the kids at school would have worn shorts, and I’d have liked to, but I didn’t want people to see my legs and I needed cover to help to prevent itching, so I wore trousers the whole time. Doing certain sports could be quite challenging. I did a lot of swimming as a kid and, funnily enough, the chlorine in the pool was okay for my skin.

I suffered a lot in high school as it could be very stressful preparing and doing exams. I actually had quite a mellow period in sixth form where it really sorted itself out. I went to university and struggled a bit with it, then went through a period of about five or six years after graduating with really good skin. But I’ve been on a downward spiral during the past six or seven years.

There’s no method to the madness. One day I could wake up looking like I’ve done 10 rounds with Mike Tyson. The type of eczema has changed as well. When I was a kid, it was more ‘traditional’ eczema: red, scabby, dry, itchy skin. As I’ve got older it’s changed, it’s more like red, angry flared skin. A bit more like sunburn if you like. It’s a unique disease.

Your medical health obviously affects your mental health as well. There have been times I’ve said to my wife that this disease is defining me now. I’m really struggling, but I know that my skin doesn’t define me. I try to look at it in a positive way. It’s helped me build resilience and become the person I am.

I have to be thinking two to three steps ahead all the time when it comes to managing my skin. I live in Cheshire, so if I’m travelling into London I make sure I book the train well in advance to get a decent seat. I need ventilation and easy access to doors/windows to keep cool and avoid things like heat and dust. I also try to avoid the Tube as heat and dust are huge environmental eczema triggers. There are so many considerations with managing day-to-day activities that most people take for granted.

I’ve had many treatments over the years, from topical steroids, oral steroids, injected steroids, creams, light treatments and systemic immunosuppressants that are used to treat people who reject organs, who have had cancer and things like that, so they’re quite hard medicines. They stopped becoming effective over time for me, but I’m fortunate that I’m one of the people trialling a new biological drug, called dupilumab. It’s a monoclonal antibody-blocking drug that is not as heavy on your body. Typically, it’s only available through the NHS fair access to medicine. It’s a subcutaneous injection taken bi-weekly. I’ve been on that for 10 weeks and my skin has improved significantly. It has been groundbreaking for me and made my eczema much more manageable. My second son has just been born so if I wasn’t on this new drug that would have been a massive challenge for me.

This new drug represents the best hope I’ve ever had for managing my eczema in the long term. The reason I have severe eczema is because my immune system is so overactive that the way it manifests itself is that it surfaces everything on my skin.

To help people understand the severity of my eczema, you have an immunoglobulin (IgE) score showing how sensitive you are to certain things. A normal person would be within a range of 1 and 10. My IgE score is 6,500. Basically I’m allergic to everything, my blood is so reactive.

And then you have environmental things like house dust mites, which is one of my biggest triggers. My wife and I sold our house and moved into a new build – we didn’t want to buy a new build – to be absolutely confident there had never been any pets or animal dander inside. Things like ‘bring your pet to work day’ are great for some people, but for me are absolute hell due to allergen triggers.

Previous owners of our old house must have had pets at some stage as I was still getting flare ups at home. We’d even gutted the house and refurbished it to no avail. But you do everything you can to try and give yourself a comfortable life.


More From The i

image beaconimage beaconimage beacon