Support Groups for everyone

Welcome to the Living Life With HS Community.

Please complete this form to request access to our peer-to-peer WhatsApp support groups. We ask for a few details to help us ensure we are building a safe and supportive environment for all members.

We have created three different groups so that nobody feels left behind. We wish to support as many people as possible and this extends to family members and carers of patients, as well as curious healthcare professionals hoping to learn more.

Once you submit your request, an admin will review it and aim to add you within 48 hours, much sooner where possible.

*IMPORTANT - if you do not hear from anyone within 48 hours, please contact us so we can make sure you are added. Thank you.

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First Name *

Please use your name and not an initial. Thank you.

Last Name *

Why do we ask for this? We are building a community based on trust, that's why we'd like to know who is using our platform. This information will not be displayed publicly, nor ever given away to any third party without your consent. It will only be stored internally, for our own records and we hope you do not think this is an over reach. We make every decision with the group as a whole in mind and hope you can understand why we require this information, thank you.

Region * Email address * Phone Number * Which of the following best describes you: * Patient Family Member, Friend, Carer Healthcare Professional Other: Where did you hear about the support group? *

Your answer helps us to understand how effective the campaign is going. Thank you.

I saw a poster Website Social Media Google/Web Search Group Selection

Choose which group(s) you would like to join

For Everyone Female-only Male-only Group Rules - PLEASE READ CAREFULLY *

Hello and welcome to the Living Life With HS Support Group. We’re a group of adults navigating a tough condition. To keep this space supportive and welcoming, please follow these common-sense rules: 1. Keep it respectful: We’re all in the same boat. Debate the topic, not the person. If things get heated, please take the conversation to a private 1-on-1 chat. Please try not to make things personal. Although we are in the same boat, we all likely walked down very different paths before boarding the boat. Keep this in mind. 2. Trigger Warnings: We know graphic photos are part of HS reality, but they can be major triggers for others. If you’re sharing a photo or video of a wound, please preface it with a text message before you send the media, warning people what they can expect. Whilst we encourage people to share images, please be extra mindful not to share images containing genitalia as this would pose issues for the group's Terms of Service and Privacy policy. Instead, please edit the image before sharing to ensure any intimate areas are blacked out/blurred. Any images shared which do not stick to this rule will be removed by a member of the admin, thank you. 3. No Unsolicited Advice: We are patients, not doctors. Please don't pressure others to try specific treatments. This doesn’t mean don’t make suggestions or give advice, please do. It just means please don’t push people. Give people the information and let them decide for themselves, please. 4. Confidentiality: What we share here stays here. Respect each other’s privacy. 5. Different stages of HS and understanding: Perhaps the most challenging point to acknowledge, but if you are a veteran of HS, just remember what you have been through, how you felt when you were diagnosed, and keep in mind that those newly diagnosed people could be anxious or concerned about some of the images shared and the topics of discussion. Use Common sense. 6. No spamming, or advertising/promotion of any kind. If you wish to promote something related to HS, then please message one of the admins to discuss, there will always be exceptions to this rule. The absolute last thing we admins want or need to be doing is resolving issues between adults. We are of the opinion that as adults, we are able to decide for ourselves, using our own free will whether we agree or disagree with something. Lastly, it is perfectly acceptable for people to disagree, but let’s just remember once more that this group respects people's right to “debate the topic”, but please, “not the person”. If it is clear there is a fundamental difference of opinion, agree to disagree and move on. Just because something may be offensive, it does not mean that you have to be offended by it. We welcome curious minds and curious questions and encourage conversation and healthy debate, however, above all else we are a support group and that’s what we are here to do, support each other - keep that idea at your forefront please. Common sense and respect should prevail and as long as we stick to that there won’t be any issues, right?! Questions? Message us directly. Let’s keep supporting each other! Cheers. Note - if an issue arises, please contact a member of the admin to discuss, we're always available and willing to chat to anyone about anything. We hope that it never has to come to this, but anyone found to be in breach of these rules may at any time be removed from the group at the discretion of the admins. Thank you.

I have read the rules, understand them and agree to follow them. Medical Disclaimer *

Living Life With HS C.I.C is a patient led support group with no medical training, background or experience. We cannot and will not provide any medical advice. We accept no liability for any actions taken as a result of communications in this support group. We cannot offer crisis support. If you find yourself in a difficult situation we advise you to reach out to these professional services who can support you right now: Samaritans: Call 116 123 (Free, 24/7) SHOUT: Text 'SHOUT' to 85258 (Free, 24/7) NHS 111: Call 111 for non-emergency medical advice

I confirm I have read the medical disclaimer. Consent & Legal (Please tick below to agree) *

1. I confirm I am 18+ years of age and a resident of the United Kingdom & Ireland (Including surrounding islands which access the NHS) 2. I have read and agree to the website's Privacy Policy and Terms of Use. We retain your personal data for as long as you remain an active subscriber or member of our community. If you unsubscribe from our mailing list or leave our support groups, we will securely delete your data within 12 months of your departure. For more information you may wish to review our Governance & Policies page. 3. If I have provided my phone number, I consent to LIVING LIFE WITH HS C.I.C. securely storing it to invite me to WhatsApp groups, and I understand my number will be visible to other members. Important note on WhatsApp: Please remember that WhatsApp is not anonymous. By joining our groups, your phone number and profile name will be visible to other members of the group.

I confirm and consent to the above.

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