AD and me: Stories from real humans with atopic dermatitis (commonly referred to as eczema)

DEB’S STORY

I had really bad AD as a kid. I was often hospitalised with staph infections and missed school when my skin was bad. AD has shaped my whole life. My family left the UK and moved to Brunei where it was hot and humid because dermatologists said it would be better for my skin. I’m pretty vain so flare ups on my face bother me a lot! I’ve had counselling to overcome the feelings of isolation I had during my childhood. I hated relying on other people and used to hide how bad it was from my parents. Looking back, I wish I had sought the right help sooner and didn’t simply put up with AD and settle. These days, I don’t let AD stop me from doing anything.

CAMILLE'S STORY

I have AD and asthma and a bunch of allergies to boot. As a child, my parents would lather moisturiser on me every night. I would end up scratching in my sleep anyway, which meant even more moisturiser the next night. Nowadays, I have better control and independence in managing my AD, but there are new challenges. I’m a registered nurse so hand hygiene is essential. A few washes and my hands sometimes become itchy and inflamed, making work difficult. I refuse to let AD dictate my life though. Whether it’s working out or going to the beach, I’m not letting AD get in the way. It takes a lot of planning and strict moisturising routines, but where there is a will, there is always a way!

ASHLEIGH’S STORY

I’m in my 20s and was first diagnosed at 3 months old. My AD has always been severe, and bullying was a big issue when I was a kid. Now that I’m older, it’s the never-ending maintenance! My routine is to apply multiple creams 3 times a day, lukewarm showers, and wet wrapping. I find I’m sick a lot and get fevers often compared to the people around me. If someone asks about my AD, I feel it’s good to educate them in a way they’d like to be educated. I’m blessed enough to say I don’t sweat too much, so I can do weights and light cardio at the gym or go for walks. I can’t stress enough how important it is to see a dermatologist. Everyone’s skin is different and what worked for your cousin or friend, may not work for you.

BENJAMIN’S STORY

AD has been with me since I was 6 months old. I had severe flare ups which needed to be treated in hospital. During bad flares I often lost most of my outer skin layers, which could cause weeping, swelling, pain, and infection. I was homeschooled for my early years because of my compromised immune system. When I started going to school, I was bullied because of my skin but after finishing school the impact on my social life has been minimal. Most adults are pretty understanding and accommodating about it. My proudest moment was taking part in a clinical trial which eventually led to PBS listing, and I was interviewed on television. Today I take a tablet each day for my AD. This would have been unthinkable decades ago. My advice to others living with AD is to advocate for yourself and keep asking your doctor about new treatments and if you could trial them.

MATHILDA’S STORY

I was first diagnosed at 2 years old. It bothers me that AD has no cure. If I wake up with a flare, I can’t go out (due to fatigue or self-confidence) or turn up late. It takes time to apply creams and attempt to cover up sores. I have missed family Christmases, refused to see my grandparents, and the leadup to my wedding was probably the worst. AD is tough to live with, but we’re far more conscious of our skin than those around us. More often than not, we bunker down in our homes rather than living life to its fullest and reaching out to other souls. The Eczema Support Australia (ESA) support group on Facebook is a terrific way to connect with other souls living with AD. Overall, AD contributes to us being strong and resilient.

JORDAN'S STORY

I had AD quite severely when I was younger – I’m managing it better since moving to Australia (I believe the climate helps). My hands, arms and face are bad in the cold weather – it makes them really dry and the skin cracks. I’ve tried a few creams and I’m currently using one which works well. Fragrances are the worst for my skin – they flare it up quite badly.

AD has also stopped me from swimming as the chlorine and salt water both dry up my skin very quickly.

CLAIRE'S STORY

I was diagnosed with AD at two weeks old. My parents were told I would probably grow out of it but when I still hadn’t ‘grown out of it’ at 21, the narrative changed. I was told I would have to live with it. Shame used to be my constant companion. I would often cancel social plans, not wanting to be at dinner feeling like scratching. Something my dermatologist said that really stuck was ‘Look after yourself as though it’s someone that you love and care about’. When I stopped worrying about how it physically looked, I began taking better care of myself. I still have flare ups and days with negative self-talk, but I’ve got the tools to manage now and I’m in a good place.

DAVID'S STORY

I was born in the UK and diagnosed with eczema at birth. I’m a very active person and proud to have raised funds for the UK National Eczema Society by completing the London Marathon. Eczema disturbs my sleep and I’ve been hospitalised 3 times in the past for intensive eczema treatments. My skin can be good one day and flare the next and I’ve no idea what causes it. When I was younger, the look of it made me quite depressed, and the itch nearly drove me mad. The best advice I got was from my GP. He said, ‘You know your skin better than anyone else so seek help if it flares, if you feel an infection coming on, or if things are getting on top of you.’

TANIA’S STORY

I’m retired now and have had AD since I was 2. I have been diagnosed with the atopic triad (atopic dermatitis [eczema], asthma, and allergic rhinitis [hayfever]) and mild food allergies. When my eczema is sore or infected, the itch interrupts my sleep. Being tired worsens the itch so I’ve learnt to avoid late nights and regularly moisturise to stop myself from unconsciously scratching dry eczema. I’ve found wearing cotton gloves underneath rubber gloves helpful when I wash the dishes, prepare food that is juicy, or work with soil. Although hair dye causes my scalp to be itchy the next day, I use a lotion to reduce the itch. Be sure to budget for regular visits to see a dermatologist; their specialised training enables them to recommend creams and treatments that suit your condition and financial situation. AD always seems worse to you than other people–they hardly notice and will love you regardless.