About Us
A World Where No One Suffers in Silence
Living with Hidradenitis Suppurativa is a marathon, not a sprint. For too long, this community has been failed by systems that do not understand our disease or our pain. Living Life With HS C.I.C. was born from a simple, powerful belief: we deserve better.
We aren’t just a website; we are a patient-led campaign, a community, and a resource dedicated to fighting for the support, advocacy, and awareness that the hundreds of thousands of people living life with HS deserve. We don’t do “molly-coddling,” and we don’t do “corporate speak.” We do real talk, real support, and take real action to make living life with this condition a little less of a battle.
What We Stand For
Our mission is built on three core actions. SAS. Every project we undertake, from this website to our future plans, focuses on these key areas as we fight to change the landscape for HS patients in the UK & Ireland.
Support > Awareness > Self-Advocacy
As we have not yet secured any funding, the entire project is being self-funded. If you are in the position to help with a donation it would be greatly appreciated. Thank you.
The People Behind the Mission
Gareth: Founder
& Campaign Lead
I’m Gaz. A Yorkshireman, a dad, and a twenty-year veteran of the HS trenches. After bouncing from the cruise ship casinos to the classrooms of St. Petersburg, Russia, Through it all I found myself facing the biggest challenge of my life: chronic illness and a system that didn’t have a clue how to help. I built this platform because I needed a hub for no-nonsense information and genuine community, and when I couldn’t find it, I decided to build it. My book was the spark, but this campaign is the fire—I’m here to make sure no one else has to fight this disease in the dark.
Nat: Merchandise &
Community Collaborator
I’m Nat. By day, I’m a junior barrister navigating the high-pressure world of the courtroom, but I’m also an HS warrior who refuses to let this disease define my limits. When I first stumbled across Gaz’s TikTok, I didn’t just find a fellow sufferer; I found someone reflecting my feelings back at me. When he talked about the mission I knew I had to be a part of it. I’m the creative force behind our merchandise and strategy, and I’m just as invested as Gaz in turning this platform into the community that we both desperately needed years ago.
Our Story – Why We’re Here
Building this isn’t about just creating a list of links or another medical disclaimer—it’s about carving out a space for the raw, unfiltered truth of what it is like to live your life with HS. We’ve both spent far too many hours in sterile waiting rooms, frustrated by a system that expects us to just ‘get on with it.
We’re here because we’re done waiting for permission. We’ve spent enough time in the dark; now, we’re busy building the future we want to see. Our roadmap for the next twelve months is packed, and frankly, we’re just getting started.
The Road Ahead: The Future of the Campaign
This website is just the beginning. Our mission to support, advocate, and raise awareness is ongoing, and we are building a formidable force. Here is the roadmap of projects we are developing to amplify our community’s voice and force real change
The “Living Life With HS” Podcast
A long-form interview platform to amplify the unfiltered voices of other HS warriors. We’re building a library of shared experiences and expert insights from the real trenches of this disease.
The Definitive HS Documentary
A feature-length, “warts and all” film that will show the raw, day-to-day reality of living with HS in the UK. We’re here to expose the full human impact of this condition for the world to see.
HS Care & Support
Packs
We are developing practical care packs—essential supplies to help manage flares at home. We’re working to ensure that when you’re in the thick of a flare, you have the right tools in your hand.
And the daily work.
Beyond the big projects, we are committed to growing our WhatsApp support network, ensuring you always have someone to communicate with. We’re also preparing to launch our official merchandise range—wearable, visible support that directly funds the mission above. Keep an eye on this space; we’ve got big plans…
The Origin Story: The Book That Started the Fight
The cornerstone of this entire campaign is the memoir, ‘A 21st Century Boydult: Wounds, Grit, Global Gallivanting…And HS’. It’s not just my story; it’s the unfiltered, no-nonsense account of a twenty-year war that kickstarted this mission. It’s the proof that you can live a life of adventure and dark humour, even when your body is against you.
About the Book: A 21st Century Boydult
This isn’t your typical medical memoir. There’s no spiritual enlightenment or heart-warming tale of triumph. It’s a pint-in-hand, warts-and-all account of life in the trenches. It’s a story forged in the chaos of cruise ships, the surreal beauty of Russia, the soul-crushing despair of the NHS, and the relentless, daily grind of just trying to be a decent dad when you feel like you’re broken. It’s about pain, shame, and resilience. It’s about travel, love, and family. It’s a book about living life to the max, or trying to, in spite of chronic illness. It’s written in my voice—blunt, honest, and unapologetically Yorkshire.
Get a Taste of the Fight: Read a Free Sample
Don’t just take my word for it. Download a free PDF sample of the book and dive headfirst into the story. The sample includes the Prologue, the infamous first chapter, “Do Not Disturb: Englishman Dying On Floor”, and the whole of
“Part 1: Conscription”. It’s the perfect introduction to the madness. You can read or download the sample below.
Buy the Book, Join the Campaign
Every copy sold isn’t just a book on a shelf; it’s a vote for awareness and a middle finger to the silence.
If you want the full, unvarnished story, you can buy the paperback or Kindle edition on Amazon now.
Disclaimer: The Living Life With HS website and the views displayed on it are not those of a medical professional. The information and stories on this website are based on personal experience(s) and are for informational and community support purposes only. This content is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your GP or other qualified health provider with any questions you may have regarding a medical condition.