Support
You’re not walking this alone. Peer spaces where people who get HS share the load — flares, wins, the quiet middle bits — without performing for anyone.
Patient-led HS support · UK & Ireland
Real Stories. Real Support. Real Life.
This is the home of Living Life With HS — a patient-led CIC for people living with Hidradenitis Suppurativa across the UK & Ireland, and the people who love them. Peer support, lived stories, and self-advocacy tools. Not a clinic. Not medical jargon. A community of people who just get HS and are here to support others in the same boat.
Start here
Pathways
Support
We host peer support groups on WhatsApp so people can connect with others who just get HS — flares, appointments, the practical stuff, and the hard days.
Learn
Understand HS in plain, lived English — how it shows up day to day, and what to ask next. Written by people living it.
Stories
Click through to hear from different people about their experience of living life with HS. Welcoming lived voices — read a chapter, or share yours when you’re ready. Everybody’s voice and their story is important.
Connect
Get in touch, contribute, collaborate, or just say ayup. We build with the community in mind. Please don’t be a stranger if you have something to say.
What is HS?
Hidradenitis Suppurativa, in plain English.
Around 1 in 100
people live with HS — you’re not imagining it, and you’re not alone.
HS (Hidradenitis Suppurativa) is a long-term inflammatory skin condition — often described as autoinflammatory. It can cause painful boils (sometimes known as abscesses or cysts), tunnels under the skin, and scarring. It often shows up in skin-fold areas (underarms, groin, under the breasts, buttocks), but it can appear on other parts of the body too.
Doctors often talk about three Hurley stages (1, 2 and 3) — a simple way of describing how widespread and connected the disease is, from milder single spots to more widespread disease with tunnels and scarring.
In the UK it often takes around 7 to 10 years to get a diagnosis — far too long.
This is a community overview for people finding us for the first time — not medical advice. For trusted clinical information see the NHS, the British Association of Dermatologists, and the British Skin Foundation.
NHSBritish Association of DermatologistsBritish Skin Foundation
Lived-experience community overview — not a diagnosis and not medical advice.
What is HS?
Why we exist
Together,
we cut the
HS silence.
HS leaves too many people without real support. We are a grassroots, patient-led community — we stand up and do this for ourselves because the system doesn’t. We raise awareness. We self-advocate. We provide a place so you are not alone and we mean it. Together we are stronger. Together we cut the HS silence.
What we stand for
SAS
Support · Awareness · Self-Advocacy
These three aren’t slogans on a wall. They’re how we decide what to build, what to say, and how we show up for each other — every chat, every story, every campaign.
Awareness
HS stays invisible when we stay quiet. We tell it straight — stories, campaigns, plain facts — so families, workplaces, and clinicians finally recognise what we’re living with.
Self-Advocacy
Knowledge you can use. Tools and language to lead your own care, ask better questions, and push for proper support — without waiting for permission.
Real support
Join our
WhatsApp
groups.
Who’s welcome: people living with HS; partners, caregivers, family and supportive friends; and healthcare professionals who want to learn. UK & Ireland. Three groups — the intake form asks which fits you, and we’ll get you set up.
Join via intake form-
Daily peer chat
Regular check-ins on flare days and ordinary days. Blunt honesty, shared tips, and company from people who live this too.
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Talk, advice & vent
A space to talk, get advice, share what’s working, rant when you need to — with people who properly understand.
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Partners & allies
For people walking beside someone with HS — questions, solidarity, and a room that isn’t only for patients.
The app we have been
building — the future of our community
WhatsApp got this community started and it is doing a great job. However, the group has grown much faster than we had expected. We recognise a health community cannot stay on WhatsApp if we want to reach the wider HS community and look after people's privacies properly.
That's why, we have been building our own app to allow us to move away from WhatsApp to something more bespoke for our community. It is currently in very early testing and not available to download or use yet. But we are working as hard as we can behind the scenes to make this possible as soon as possible for you and we're hoping to make it available in the new year. Until then, let us show you a few of the features of the app we're building. And if you would like to join when the app is available, please leave your email address below to be notified when it goes live.
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Health journey
Log symptoms and flares, add appointments, and see them on a calendar. It stays private.
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Rooms
There is a room for everyone — regional rooms, topic groups if you wish to join them, and a DM section where you can create your own groups and invite members. A valid email is required before you can post.
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Your settings
Detailed, optional privacy controls allow users to stay in control and feel safe while being supported or supporting others. We have worked hard to think about what users may wish to have included in their settings.
Email me when the app is ready
We will only use this to tell you when the app opens to everyone.
About us
Built by people
who live this.
Living Life With HS C.I.C. is patient-led. We are people with HS, family, and friends — not a clinic, not a brand exercise. Lived experience plus clear public guidance. Never medical or legal advice.
The blog
Weekly Blog Updates, every Tuesday
Does Stress Trigger HS? What Six Months of Building a CIC Did to My Skin
Does stress trigger HS flares? Gaz on six months full-time and unpaid building a CIC, twelve rough weeks of flares, and what he's trying this winter.
Getting Through the Night with an HS Flare: Lived Notes for When Pain and Leaks Wreck Sleep
2.47am. Not a dream. The cold patch under my thigh is real, and it’s the dressing I put on at teatime giving up and leaking through to the sheet. My side of the bed is soaked. Half my brain is asking whether I can just ignore it until morning. You can’t. I’ve tried. It’s still […]
What’s in an HS Bad-Day Kit? Everyday Flare Packing for UK Life (Not Just Holidays)
Tuesday Tesco. Not the airport. That’s the difference. We’ve already done the holiday go-bag — flights, security letters, packing like you’re emigrating with a pharmacy. Useful if you’re actually going somewhere. Most of us, most weeks, aren’t. We’re doing the school gate, the bus, a supermarket run, a waiting room with a hard chair and […]
Shop
Wear your resilience.
Community merch that funds the work — soft prints, hard pride.
Disclaimer: Living Life With HS and the views on this site are not those of a medical professional. Information and stories are based on personal experience for informational and community support purposes only. Not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your GP or other qualified health provider.