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

About Us - Support: You’re Not Walking This Alone. An icon-based graphic for Living Life With HS C.I.C. featuring a group of people icon. The text states: We’ve built a network for HS warriors to share the load and celebrate the small wins. Whether you need a place to listen or a place to be heard, you’ll find it here.

Awareness: Shattering the Silence. An icon-based graphic for Living Life With HS C.I.C. featuring a megaphone/shouting icon. The text states: For too long, HS has existed in the shadows. It’s time for that to change. Through raw storytelling and bold campaigns, we’re ensuring that everyone living life with HS finally has a visible, powerful identity.

Self-Advocacy: Arm Yourself with Knowledge. An icon-based graphic for Living Life With HS C.I.C. featuring a megaphone icon. The text states: Knowledge is your greatest tool. Equip yourself with the facts you need to take the lead in your own care and fight for the support you deserve.

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.

Support us here

The People Behind the Mission

Gareth: Founder
& Campaign Lead

Gareth (Gaz) Marshall, founder of Living Life With HS

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.

Stuart Axford
Lincolnshire

I’m Stu, and I’m a Xennial living in Lincolnshire. I have lived with HS for 30 years, now at Stage 3, and have undergone 8 surgeries directly related to HS, all since 2016. I have been trying to raise awareness with family, friends, employers, and anyone who will listen, particularly since moving onto biologics. Since reading Gareth’s book and finding Living Life With HS, I have realised I’m not alone, and that we understand the pain and anxiety HS causes. I hope I can use my professional skills and personal experience to help us grow and make meaningful change for people with HS.

Gillian Edmunds
East Riding of Yorkshire

Gillian Edmunds, volunteer, East Riding of Yorkshire

My name is Gillian. I’m 46 and from Yorkshire. I am married and have three children: James, 19, and identical twins Sophie and Jessica, 16. I was diagnosed with HS at 25, although I had suffered for years before that. I’m currently stage 2. Knowing there are others who understand and get it makes you feel so much less alone.

Kerrie Garcia
Jersey, Channel Islands

Kerrie Garcia, volunteer, Jersey, Channel Islands

My name’s Kerrie. I’m 31 and based in the Channel Islands. I was diagnosed with HS in 2018 and I’m now stage 3, waiting on deroofings and wide excisions after medical treatment hasn’t worked. I want to be part of this so people with HS aren’t alone, so we’re seen, and so we have a safe place to speak to people who get it. This mission, with Gaz and the others, has changed my life. I feel seen, heard, supported, and valued.

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.

Important: every item below depends on funding, partnerships, and timing. We’ll deliver what grants, sponsorship, and trading income unlock — not everything at once.

8-Part Video Podcast

An eight-part Living Life With HS video podcast bringing serious, sensible voices into one series: people living with HS, GPs and dermatology clinicians, someone from clinical trials or a biotech company willing to explain their role in developing treatments, and ideally a political perspective too. Expect a balanced mix — roughly several patient episodes alongside several professional and industry viewpoints.

National Patient Gathering

A Yorkshire meet-up for people living with HS — connection and community in person, not another lecture hall. Scale and timing follow funding. This is planned as the first of a yearly gathering: planting our flag, marking a year of this grassroots organisation, and saying we’re here to stay. Members of our community have asked for it — and it stands for the two-plus years of work behind getting Living Life With HS to this point, as we grow our community and our voice.

Patient App

A purpose-built app beyond WhatsApp: stronger privacy controls, better user settings, and ways to find people near you so real-life communities can grow alongside online support. Planned in stages as funding and costs allow — it’s how we scale safely past a small chat-group ceiling.

Local Coffee Mornings

East Riding coffee mornings with local volunteer Gillian, run together with Gaz. We’ve applied for funding so this can grow beyond a one-off. The aim is twofold: bring people with HS together in real rooms, and raise awareness with the wider public at the same time.

Merch & Trading

Fresh merchandise drops aimed at every quarter — four ranges a year. We’re working on the next drop now, lined up before Christmas, with proceeds feeding the mission.

Company Infrastructure

The unglamorous backbone: securing the website for the long haul and putting proper public liability insurance in place so we can legally host gatherings and bring people together safely.

And the daily work.

Day to day we keep showing up for the peer community already running — the WhatsApp support groups that exist right now — while the bigger roadmap above gets funded and built. Keep an eye on this space; we’re moving as fast as money and capacity allow.

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.

Book cover: A 21st Century Boydult — Wounds, Grit, Global Gallivanting…And HS

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.

Download free sample

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.

Buy the book, support the mission

Company documents

Our company documents and policies, all in one place.

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.