Living With Severe Eczema for 37 Years: Rhys Jenkins’ Story

Living With Severe Eczema for 37 Years: Rhys Jenkins’ Story

Living with severe eczema can affect far more than the skin. From childhood and education to employment, relationships and mental wellbeing, the impact of this chronic condition can shape almost every aspect of a person’s life.

For Rhys Jenkins, a 48-year-old from Auckland, New Zealand, severe eczema has been part of his life for 37 years. His journey has involved painful flare-ups, hospital admissions, difficult treatment decisions and periods when managing everyday life felt almost impossible.

In this deeply personal account, Rhys shares the reality of living with severe eczema, the emotional and physical challenges he has faced, and the people and treatments that have helped him along the way.

My Journey With Severe Eczema

I’m Rhys Jenkins, 48, from Auckland, New Zealand. I’ve had eczema for 37 years, and looking back, it’s hard to remember it all clearly – I don’t think you can really remember pain and discomfort, not the way you remember other things.

When Eczema First Appeared

It started on my feet when I was about 10 or 11. I was a skateboarder, and I’d get hot and sweaty inside my shoes, pull my socks off, and rip them to shreds trying to get them away from my skin. From there it gradually spread up my body. By 12 I’d seen my first dermatologist and was diagnosed with severe atopic eczema — slightly unusual, since I hadn’t had it as a young child, which they put down to puberty and the immune system shifting. Around the same time my hay fever exploded, mostly in my eyes, and allergy testing showed I was highly allergic to cats, dogs, cut grass, dust mites and shellfish.

The Emotional Impact of Growing Up With Eczema

High school was where the mental side of this really took hold. When your skin is bad, it doesn’t just hurt — it hammers your confidence in a way that’s hard to explain to someone who hasn’t lived it. I didn’t want to be there, and I think I caused a bit of mischief just to get out of class, or maybe because some part of me wanted other people to feel a fraction of how uncomfortable I felt. Of course, nobody else could really feel it, but as a teenager you don’t understand that yet. You just feel alone in it.

The dermatologist would give me steroid injections, and within 24 to 48 hours my eczema would completely vanish — you’d never have known I had it. It worked like clockwork, lasting four weeks before my skin would start to go blotchy again. I lived month to month like that from about 13 to 18, until the steroids’ side effects – water retention, a much rounder face – meant we had to stop.

Years of Searching for Effective Eczema Treatments

From my late teens I went on a long search through Western and alternative medicine -Chinese medicine, elimination diets, anything that might help. This was the early ’90s, and I tried immune suppressants like azathioprine, cyclosporin and methotrexate. Most didn’t work; azathioprine was actually a cancer drug, and it just made me vomit every day and feel dreadful. Cyclosporin gave me the best results of that era, but in my early-to-mid twenties it pushed my blood pressure up so high – a nurse nearly fell over taking my reading – that I was admitted to Auckland Hospital. The first time I’d been hospitalised for my skin, after roughly ten years of dealing with it alone.

Learning to Manage Severe Eczema at Home

I’d usually stay in the ward five to seven days for intensive treatment. It was during one of those stays, about 25 years ago, that a wonderful, no-nonsense matron taught me -and my mum, as my carer – how to do wet wraps at home. That technique became a massive part of managing my skin without more drugs going into my body, and I’m grateful to her, and to my mum, who learned it all and was incredible through that whole period.

To any parents reading this caring for a child with eczema – I understand how massive that impact is on you too. It’s hard to get other people to understand it. Unless someone has stayed overnight with a child mid-flare, they tend to think it’s “just a rash.”

The Invisible Burden of Living With Severe Eczema

That’s the hardest part for me to put into words – the itch itself, and what it does to your head. It’s a bit like Chinese water torture. One drop feels like nothing, but drop after drop, hour after hour, it starts to feel like a hammer in your skull. You’re hot, itchy, tense, constantly holding back the urge to scratch, and exhausted by the end of it – even when nobody else can see it because it’s covered by your clothes. People assume that if they can’t see it, there’s nothing wrong. But you’re still carrying something raw and weeping underneath, and carrying it completely alone, because eczema is so easy for everyone else to dismiss as minor.

That isolation is its own injury, separate from the skin.

How Eczema Affected My Working Life

Holding down work was difficult too. I moved through jobs as a mechanic, carpenter, spray painter and printer – I loved spray painting cars, but the fumes and heat were brutal on my skin. Over time I learned to choose work that wouldn’t aggravate it, since heat, sweat, dust and dirt were always the enemy, and getting careless meant infections, a few of which landed me back in hospital. Without steady qualifications, my job history was scattered, rarely more than a year in any one place, and for much of my life I relied on the sickness benefit. But I met a lot of good, interesting people along the way, and I don’t look back on it as all bad.

Living With Eczema and Serious Eye Complications

Alongside the eczema, I’ve had a related eye condition for almost as long – allergic conjunctivitis, the same immune response showing up in the eyes, with the cornea becoming inflamed. In 2006, my right cornea ulcerated badly enough that I eventually needed a corneal transplant, and I lost significant sight in that eye for good.

Finding Hope Through New Eczema Treatments

I met my wife Vanessa when I was 31 – she’s been an absolute rock in my life ever since. In 2015, my GP referred me to a clinical trial for dupilumab. Within about six months, large painful nodules on my arms and trunk – built up from years of scratching and skin that simply couldn’t heal – began clearing up. For the first time, I could hold down a full-time job instead of just part-time. My mood lifted along with my skin, in a way I hadn’t felt before. Our daughter was born while I was on the trial. It was genuinely the first real chance I’d had to feel normal – not just physically, but in my own head. I was on the Dupixent trial for four years.

Losing Access to a Life-Changing Treatment

Because the drug worked so well worldwide, the company accelerated approval and wound the trials down early – including mine, with barely any warning, and no compassionate access offered afterwards despite paperwork suggesting it might be possible. Losing that drug so abruptly, after years of finally feeling like myself, wasn’t just a skin setback. It took the floor out from under everything I’d rebuilt – my work (I had to stop working), my confidence, my sense of having a normal life. Over the following months, my skin slid right back to where it had been, and so did I.

Family Support and Advocating for Better Treatment Access

In 2019, I lost vision in my left eye too, with more scarring left on the cornea. I was lucky to get most of my sight back, but it was another hard knock the same year. I went back onto cyclosporin through the public hospital system – the only real option here at the time – while Australia had already gained access to dupilumab. Vanessa has spent the five years since, trying to understand why New Zealand wasn’t getting the same access, eventually getting involved with the Eczema Associations of New Zealand and Australia. It’s been a steep learning curve for her, but I think channelling her energy as my caregiver into advocacy has helped her too – caring for someone with severe atopic eczema, day in and day out, takes its own toll. Watching someone you love go through this, and not being able to fix it, is its own kind of hard.

Looking Ahead: Hope for Better Eczema Treatments

In 2023, I went onto a trial for upadacitinib (Rinvoq) after a genuinely difficult stretch back on cyclosporin – weeping, raw, wrapped skin, struggling. The washout coming off cyclosporin was heavy going. Like every drug, Rinvoq has its own side effects, but for me its real magic has been the itch – it’s taken that relentless, hammering itch away almost completely.

Though my skin isn’t being held very well by the treatments available to us now, we’re hopeful that one day soon we’ll have access to other biologic treatments that are safe for long-term use, to be able to use in conjunction with what we already have. So, my message to you is: don’t give up. Even when there doesn’t seem to be light at the end of the tunnel, we will make it there in the end.

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You Don’t Have to Face Eczema Alone

Rhys’s story highlights the impact severe eczema can have on physical health, mental wellbeing, employment and family life. It also reminds us of the importance of understanding, appropriate treatment and support for both people living with eczema and those who care for them.

At the Eczema Association of Australasia, we know that eczema is much more than a skin condition. Whether you’re managing your own symptoms or supporting someone you love, having access to reliable information and a supportive community can make a difference.

If you or someone you love is living with eczema, we’re here to help.

Visit eczema.org.au for eczema information, resources and support.

We thank Rhys for generously sharing his personal experience with our eczema community.

This article shares an individual’s personal experience and is not intended as medical advice. Treatment decisions should always be discussed with a qualified healthcare professional.