Community Guidelines
Last updated: 25th July 2026
Welcome to our community. These guidelines help ensure that My HS Journey remains a safe, empathetic, and supportive space for everyone living with Hidradenitis Suppurativa. By participating in our community, you agree to uphold these values.
Purpose of the community
This is an independent peer-support community for adults affected by hidradenitis suppurativa.
Members may share experiences, ask questions, offer encouragement and discuss practical ways of living with HS.
The community is not a medical service, counselling service or emergency service.
Adults Only
Membership is currently limited to people aged 18 or over.
By joining, you confirm that you are at least 18.
Respect and inclusion
We do not permit:
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Bullying or harassment.
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Personal attacks.
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Discrimination.
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Shaming based on appearance, weight, smell, scarring, treatment, disability, lifestyle or disease severity.
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Sexual harassment.
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Threats or intimidation.
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Repeated unwanted private messages.
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Deliberately inflammatory behaviour.
Disagreement is permitted. Cruelty is not.
Conduct Rules
Peer experience, not medical instructions
You may explain what you personally experienced, but do not present yourself as diagnosing or treating another member unless you are appropriately qualified and clearly identify the limits of your role.
Use wording such as:
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“This was my experience.”
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“This is what my dermatologist advised me.”
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“You may wish to ask your healthcare professional about this.”
Do not tell another member to:
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Stop or change prescribed medication.
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Ignore professional medical advice.
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Delay urgent treatment.
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Use somebody else’s prescription.
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Take unsafe doses.
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Perform a medical procedure on themselves.
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Drain, cut or inject a lesion.
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Treat a serious infection only at home.
Administrators may remove content that creates a foreseeable risk of harm
No miracle cures or false guarantees
Do not claim that a product, diet, supplement or treatment:
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Cures HS.
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Works for everybody.
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Is guaranteed to prevent flares.
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Makes medical treatment unnecessary.
Personal results must be described as personal experience, not proof.
Graphic photographs and sensitive media
HS photographs can be useful, but they can also be distressing and may reveal highly sensitive information.
Before sharing an image:
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Clearly write CONTENT WARNING: GRAPHIC HS IMAGE.
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Briefly describe the body area without unnecessary detail.
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Give members time to decide whether to open it.
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Use WhatsApp’s View Once feature where appropriate and available.
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Avoid including your face, address, documents, medication labels or other identifying details.
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Do not include another person in the image without their permission.
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Never share intimate images of anybody under 18.
Do not pressure members to view or share photographs.
View Once reduces casual retention but does not create a guarantee of confidentiality. A recipient could still use another device to record the screen or otherwise retain information. Share only what you are comfortable disclosing.
Privacy and confidentiality
Do not:
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Screenshot or screen-record another member’s message or photograph.
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Forward community content outside the group.
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Copy a member’s story into another group.
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Post identifying information about another member.
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Contact somebody privately for romantic, sexual, sales or promotional purposes without invitation.
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Publish group discussions on social media.
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Give another person access to your WhatsApp account to read the group.
The administrators cannot guarantee that every participant will obey these rules. Members should share cautiously and avoid posting information they would not want another participant to retain.
No unauthorised research, journalism or content collection
You may not join or use the community to:
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Recruit research participants.
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Gather patient stories.
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Conduct surveys.
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Create journalism, documentaries, podcasts or social-media content.
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Train artificial-intelligence systems.
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Collect testimonials.
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Analyse group conversations.
Written administrator approval and any legally required member consent must be obtained first.
Do not advertise or sell products, services, supplements, treatments, coaching, events or fundraising campaigns without prior administrator approval.
This includes:
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Affiliate links.
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Discount codes.
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Multi-level marketing.
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Repeated links to personal businesses.
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Private sales messages.
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Requests for money.
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Claims that a commercial product cures or treats HS.
Approval to mention a product does not amount to a medical endorsement.
Selling, promotion and fundraising
Protecting professional and personal information
Do not publicly identify or accuse an individual healthcare professional of misconduct in a way that may be defamatory.
You may discuss your experience factually, but avoid sharing:
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Home addresses.
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Personal telephone numbers.
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Private email addresses.
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Medical-record numbers.
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Appointment letters containing identifiers.
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Unredacted prescriptions.
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Another person’s medical details.
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Use the appropriate NHS or professional complaints process for formal complaints.
Crisis and immediate danger
This community is not continuously monitored and cannot provide emergency intervention.
If you or another person may be in immediate danger, contact emergency services or an appropriate urgent healthcare service.
Members should not assume that posting in the group will produce an immediate response.
Administrators may contact emergency services or another appropriate organisation where they reasonably believe this is necessary to address an immediate and serious risk, although they cannot guarantee that they will see or act on every message.
Reporting concerns
Report concerning content privately to an administrator at:
Please provide enough information for the concern to be located and reviewed. Do not create a public argument about a report.
Moderation
Administrators may take action including:
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Giving a reminder or warning.
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Removing a post where technically possible.
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Restricting discussion.
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Removing a member.
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Blocking re-entry.
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Preserving limited evidence of serious misconduct.
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Reporting unlawful or dangerous activity to WhatsApp or an appropriate authority.
Moderation decisions will consider member safety, privacy, context, severity and repeated conduct.
We cannot review every message immediately and do not guarantee that all inaccurate, offensive or harmful content will be identified.
Leaving the community
You may leave at any time.
Leaving does not necessarily remove earlier messages from other participants’ devices, backups or chat history.
You may contact us to request deletion of application or administrative information that we control, subject to any lawful reason for retaining limited records.
Agreement
By joining or continuing to participate, you agree to follow these guidelines.
The guidelines may be updated where necessary. Material changes will be announced in the community.
Serious or repeated breaches may result in removal without further warning.
My HS Journey provides peer support and general educational information. It is not a medical service, emergency service or substitute for professional healthcare. This page provides general information and lived experience, not diagnosis or individual medical advice. Do not start, stop or change treatment because of this content. Speak to an appropriately qualified healthcare professional about your circumstances.