Frequently Asked Questions
Medical disclaimer: Living Life With HS offers peer support, information and awareness. We do not diagnose, prescribe or replace NHS care. For symptoms or treatment, speak to your GP. Trusted clinical information: NHS – Hidradenitis suppurativa and the BAD patient leaflet.
ABOUT US
What is Living Life With HS?
Living Life With HS is a patient-led Community Interest Company supporting people with hidradenitis suppurativa in the UK. We focus on peer support, information, awareness and self-advocacy. Our website is livinglifewithhs.co.uk. Company number 17112524.
What does SAS mean for us?
SAS is our mission in three words: Support, Awareness and Self-Advocacy. Support means peer connection and practical solidarity. Awareness means making HS more visible and better understood. Self-Advocacy means helping people find their voice with clinicians, systems and everyday life.
Who runs Living Life With HS?
Living Life With HS C.I.C. is led by Gareth Marshall (Chair and Managing Director) and Joe Duffill (co-director), with volunteers and community collaborators. We are patient-led.
Is Living Life With HS a charity?
No. We are a Community Interest Company (C.I.C.), not a registered charity. A CIC is a UK company form built for community benefit, with an asset lock so the organisation stays focused on its social purpose. You can look us up on Companies House under company number 17112524
What is Living Life With HS C.I.C. and how is it different from NHS clinical care?
We are a peer support and advocacy organisation, not a clinical service. The NHS diagnoses and treats HS. We help people feel less alone, share lived experience, and find information and community. Use us alongside your GP or dermatologist — never instead of them.
Where is Living Life With HS based?
We are based in East Yorkshire, in the UK. Our online community and website serve people across the UK & Ireland.
SUPPORT AND COMMUNITY
Where can I find HS peer support in the UK?
Living Life With HS runs WhatsApp peer support groups and publishes lived-experience stories on our website. Other independent HS communities also exist. For medical care, start with your GP. For peer support with us, view the main site. Visit Living Life With HS
Is there an HS WhatsApp support group with Living Life With HS?
Yes. We run WhatsApp peer support for people living with HS, including groups organised so people can find a space that fits them. This is peer support between people with lived experience. It is not a crisis line or a clinical advice service.
How do I join the Living Life With HS WhatsApp groups?
Fill in our quick google form to join the WhatsApp peer support community. Open the WhatsApp join form.
What is Your Stories?
Your Stories is our series of lived-experience warrior stories on the website. People share what HS has been like for them in their own words, with photos where they choose. If you would like to share your story, use our form. Open the Your Stories form
Do you send a newsletter?
Yes. We send community and CIC updates by email. To join the list, fill in a quick google form. Open the newsletter signup form
Is there a cost to join?
No. Peer support, the website and Your Stories are free to access. Optional merchandise may be available separately. Donations are welcome when we have a live donation route, but they are not required to get support.
What is the difference between a patient support community and seeing a GP or dermatologist for HS?
A patient support community offers lived experience, emotional solidarity and practical tips from people who have HS. A GP or dermatologist provides clinical assessment, diagnosis and treatment. You need both kinds of help for different jobs. Peer support does not replace NHS care.
ABOUT HS (SIGNPOST ONLY)
What is hidradenitis suppurativa (HS)?
Hidradenitis suppurativa (HS) is a painful, long-term skin condition that causes abscesses and scarring. It often affects areas such as the armpits, groin, under the breasts and buttocks. For a full clinical overview, read the NHS page on hidradenitis suppurativa. For symptoms or treatment, speak to your GP. Trusted clinical information: NHS – Hidradenitis suppurativa and the BAD patient leaflet.
Is HS contagious?
No. HS is not infectious and cannot be passed from person to person. That is the position of UK clinical sources such as the NHS and the British Association of Dermatologists. See the NHS HS page for more.
Is HS caused by poor hygiene?
No. Poor hygiene does not cause HS. That is a common myth and it is harmful. The NHS and BAD are clear that HS is not linked to poor hygiene. If you are struggling with symptoms, speak to your GP.
Where should I go for medical help with HS in the UK?
Start with your GP. They can examine you, discuss management and refer you to dermatology when needed. If mood, pain or daily life are hard to cope with, tell your GP that too. Living Life With HS can offer peer support while you pursue clinical care.
Where can I read trusted UK information about HS?
Start with the NHS hidradenitis suppurativa page and the British Association of Dermatologists patient leaflet (links above). Our website also shares lived experience through Your Stories and the blog, always with the reminder that we are not a clinical service.
WORKING WITH US / LANDSCAPE
Do you work with researchers, clinicians or the NHS?
Yes, where we are invited and it fits our mission. We take part in patient-voice and research conversations when it helps people with HS. We do not claim to speak for every person with HS, and we are clear when we are sharing lived experience rather than clinical advice.
How can clinicians, researchers or partners get in touch?
Email livinglifewithhs@gmail.com. We are open to conversations about patient insight, awareness, research involvement and partnership where it serves people living with HS.
How is Living Life With HS funded?
In our Foundation year we run lean, with small community income such as merchandise and donations, while grant applications are in progress. Director roles are unpaid at this stage. All progress to date has been self-funded by the directors.
How do I contact Living Life With HS?
Email livinglifewithhs@gmail.com or use the contact options on livinglifewithhs.co.uk.
Are you the same as other HS support groups?
No. Living Life With HS C.I.C. is a separate patient-led organisation with our own website, WhatsApp community and Stories programme. Other independent groups also support people with HS. Patients can use more than one community if that helps them.
What happened to the Hidradenitis Suppurativa Trust — where do people go for support now?
The Hidradenitis Suppurativa Trust (Charity Commission number 1177819) is recorded as removed as of 12 September 2024, so it should not be treated as an active charity. For clinical care, speak to your GP. For peer support, you can contact Living Life With HS or other current HS communities listed on trusted UK resources such as the BAD patient leaflet.