17 Years of Eczema: From Carer to Advocate, Vanessa Jenkins’ Story
For Vanessa Jenkins, eczema has never been “just a skin condition”.
Her journey began 17 years ago when she met her husband, who lives with severe atopic eczema. At the time, Vanessa knew very little about eczema or how deeply it could affect not only the person living with it, but their whole whānau.
Over the years, she came to understand the realities that can sit behind severe eczema: sleep deprivation, pain, mental health challenges, isolation, interrupted careers, pressure on relationships, and the constant work involved in managing a chronic and unpredictable condition.
What Vanessa couldn’t have known then was where this journey would eventually take her, from supporting her husband through some incredibly difficult years to becoming an advocate for the eczema community in Aotearoa New Zealand and beyond.
When treatment changed everything
One of the biggest turning points for Vanessa’s family came when her husband was accepted into a four-year clinical trial for a new eczema medication.
The impact was life-changing.
For the first time in more than 25 years, Vanessa says her husband was almost eczema-free. He was able to work full-time and, after eight years of trying, Vanessa and her husband were able to conceive their daughter.
But in 2018, the trial ended.
So did their access to the medication.
Despite knowing that the treatment worked for him, it was not available in New Zealand.
Vanessa watched as her husband’s eczema returned.
“Watching my husband relapse, knowing that an effective treatment existed but was out of reach, was devastating.”
She felt helpless, angry and determined to understand what options were available.
That search would eventually lead her to the Eczema Association of New Zealand.
Finding EANZ and finding support
When Vanessa first connected with EANZ, she was looking for information and support for her husband.
She found practical advice, education and strategies to help manage eczema, but something else mattered just as much: being heard by people who understood.
“From the very first contact, I felt less alone.”
Through ongoing conversations with the Association, Vanessa was eventually invited to volunteer.
What began as a desire to help others going through similar experiences gradually grew into something much bigger.
From carer to advocate
Over the following four and a half years, Vanessa’s role with EANZ grew in ways she had never anticipated.
She met with Members of Parliament and health organisations, spoke with media, collaborated on community projects and contributed to New Zealand’s first eczema-specific data report.
She also helped advocate for improved access to eczema treatment in New Zealand and began speaking publicly about the realities faced by people living with eczema and their families.
For someone who once felt unsure of her voice, Vanessa found herself speaking with dermatologists, GPs, nurses, policymakers, organisations and people from across the eczema community.
And she discovered that lived experience could be powerful.
Taking the eczema community’s voice further
Vanessa’s advocacy work has also taken her beyond New Zealand.
She has travelled to Australia, Belgium and Prague, connecting with global advocates and learning from dermatology leaders, researchers, policymakers and others working to improve eczema care around the world.
These experiences helped Vanessa better understand how health systems and policy decisions work, and how persistence, evidence and lived experience can all play a role in creating meaningful change.
She has also become involved with GlobalSkin and the eczema community internationally, giving her a wider perspective on the scale of advocacy happening around the world.
But through all of those experiences, one thing has remained at the centre of Vanessa’s work.
People.
“Supporting the eczema community in Aotearoa has been the greatest privilege of all.”
She has been trusted with the stories of people and whānau navigating eczema, including their frustrations, fears, challenges and hopes.
For Vanessa, being able to listen, support and advocate alongside them has been one of the most meaningful parts of the journey.
The people behind the advocacy
While Vanessa has gained confidence through advocacy, she is quick to acknowledge that the journey has never been hers alone.
She credits the EANZ and Eczema Association of Australasia team with supporting, mentoring and encouraging her along the way.
The experience has also reinforced something she learned much earlier in her family’s eczema journey: support matters.
Living alongside a chronic condition can take an enormous toll, not only on the person experiencing it, but also on those caring for and supporting them.
And that understanding has helped shape Vanessa’s next chapter.
A new chapter
Vanessa intends to continue advocating for improved access to eczema treatments in New Zealand, but her experiences have also led her towards a new area of work focused on burnout prevention and helping people navigate stress and overwhelm.
It is deeply connected to her own experiences.
Vanessa has experienced burnout twice over the past 12 years, not solely because of her role as a carer, but through the cumulative pressures life can bring.
Those experiences taught her to recognise the importance of slowing down, seeking support and allowing ourselves to receive care too.
“This journey has reshaped how I view strength, not as pushing through at all costs, but as knowing when to seek support, set boundaries, and allow change.”
For Vanessa, the years spent caring, advocating, listening and learning have shaped not only what she does, but how she sees resilience.
“You are not alone”
After 17 years, Vanessa doesn’t minimise what eczema has taken from her family.
But she can also see what the journey has given her: connection, insight, purpose and a clearer understanding of what matters most.
And if there is one message she hopes another person or carer takes from her story, it is this:
“You are not alone. Your voice has value. And with the right support, even in the hardest moments, things can change.”
At the Eczema Association of New Zealand, we know that eczema can affect much more than the skin. Whether you live with eczema yourself, care for someone who does, or support a child or whānau member, you don’t have to navigate it alone.
