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Welcome to Living Life With HS

Living with Hidradenitis Suppurativa can feel very lonely. It is easy to feel like no one else understands what you are going through. But here, we do.

Think of Living Life With HS like a campfire. It’s a safe, warm place to sit down, rest, and share your load with people who truly get it. We aren’t doctors or medical experts. We are patients, family members, and friends who are walking the same path as you.

We built this space so that no one has to face this condition alone and we hope that you find it a vital resource for HS support in the UK & Ireland. Whatever you do, please make sure you don’t leave without joining out WhatsApp Support Group, or sign up for the monthly newsletter, ideally both. With HS, the old saying “a problem shared is a problem halved” could not be more true. Pull up a seat, or perch, and explore what this community has to offer.

What is hs?
Benefits (DWP)
Your stories
Blog
HS Toolkit

It’s Time To Cut The HS Silence

What We Stand For (SAS)

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.

Changing the HS Landscape

We did not build this platform to repeat the same tired advice you get in a five-minute doctor’s appointment. We built it because the standard system is failing people living with Hidradenitis Suppurativa. Living Life With HS C.I.C. is a patient-led movement focused entirely on practical, everyday realities. Our goal is straightforward: to drag this condition out of the shadows, cut the HS silence, and put the power back in your hands, all while supporting each other as we build the resource we all so desperately need. Together, we are stronger.

Read more about us

Real Support

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Join Our WhatsApp Support Group(s)

Meet with other likeminded people Living Life With
HS in the UK & Ireland. Chat, help and support each other through the trials and tribulations of HS. There are three groups to chose from, hopefully something for everyone so that nobody feels alone and has the support they need.

Click to join below.

HS SUPPORT GROUP

From the Community: Warrior Stories

Here are the real stories from the front lines, shared by the brave warriors of our community. Read about their struggles and their successes, hear their voice, and know that you are not alone in this fight. Feeling courageous? You can share your own story with the world. Your voice matters. Click here.

read more warrior stories

Join The Community. Join The Fight

JOIN OUR MAILING LIST

The Blog

Our blog is a growing library of no-nonsense advice, personal stories, and practical guides to help you navigate life with HS. New articles added regularly. Have something to say? We’d love to publish YOUR blog article too. Get in touch with us to discuss having your idea published on the site. Every voice matters and you may say WHATEVER you like without being filtered. Sick and tired of having your posts removed from Social Media because they break rules? No bother, you can share them here.

Read More from the Blog

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.