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Community

HS Support Groups

You do not have to face HS alone. Others who understand exactly what you are going through are waiting to connect with you.

Hidradenitis suppurativa is a profoundly isolating condition. The pain, the odor, the unpredictability, the social anxiety, these are experiences that people without HS simply cannot fully understand. That is why connecting with others who live with HS can be one of the most powerful things you do for your mental health and disease management.

HS communities are not just places to vent, they are repositories of lived experience, treatment knowledge, and practical wisdom that no medical textbook contains. From product recommendations to surgical recovery tips to relationship advice, the collective knowledge of the HS community is invaluable.

Why Community Matters for HS

7–10 years
Average time to HS diagnosis

Community members often help each other recognize symptoms and advocate for faster diagnosis.

40%+
HS patients experience depression

Peer support has been shown to reduce depression and anxiety in chronic illness patients.

~1% globally
Estimated HS prevalence

HS affects roughly 1% of the population worldwide, meaning many people share this experience.

Online HS Communities

Online communities are the most accessible form of HS support, available 24/7, from anywhere in the world, and often anonymous if you prefer privacy.

r/Hidradenitis

Reddit50,000+ members

Active community with daily posts, treatment discussions, and emotional support. Anonymous and moderated.

HS Warriors

Facebook30,000+ members

Large, active Facebook group for HS patients. Supportive community with regular posts and shared experiences.

HS Support Group

Facebook25,000+ members

General HS support with a focus on emotional wellbeing and daily life management.

HS Awareness

InstagramVarious members

Multiple HS awareness accounts sharing patient stories, treatment updates, and community content.

Finding In-Person Support

While online communities are more accessible, in-person connections can provide a depth of support that is difficult to replicate digitally. Here is how to find local HS support:

Ask Your Dermatologist

Your dermatologist may know of local patient support groups or be willing to connect you with other patients (with consent).

Check Local Hospitals

Many hospitals run chronic illness support programs. Contact the patient services department at your local hospital or academic medical center.

Patient Advocacy Organizations

Organizations focused on HS awareness sometimes organize local events, meetups, and awareness walks.

Create Your Own Group

If no local group exists, consider starting one. Online platforms like Meetup.com make it easy to organize gatherings for people with shared experiences.

Support for Caregivers

Partners, family members, and friends who support someone with HS also need their own support. Caregiver burnout is real, and it is important for caregivers to have spaces where they can process their own experiences.

Resources for Caregivers

Our Caregiver Support page has dedicated resources for partners and family members, including how to provide emotional support, manage caregiver burnout, and navigate difficult conversations.

Visit Caregiver Support

Frequently Asked Questions

Are there online support groups for hidradenitis suppurativa?
Yes. The largest HS online communities include the r/Hidradenitis subreddit (over 50,000 members), multiple Facebook groups (HS Warriors, HS Support Group, and others with tens of thousands of members), and Discord servers. These communities offer 24/7 peer support from people who truly understand the condition.
How do I find an in-person HS support group near me?
In-person HS support groups are less common than online communities but do exist in larger cities. Check with your dermatologist or local hospital for patient support programs. The HS Connect organization and regional HS patient advocacy groups sometimes organize local meetups and events.
Is it helpful to talk to others with HS?
Research on chronic illness peer support consistently shows significant benefits, reduced isolation, better coping strategies, improved treatment adherence, and lower rates of depression and anxiety. For HS specifically, connecting with others who understand the condition can be transformative, particularly for managing the emotional and social impacts of the disease.
How do I talk to family and friends about my HS?
You are not obligated to share your diagnosis with anyone. When you do choose to share, simple explanations work best: 'I have a chronic skin condition that causes painful lumps and requires ongoing medical treatment.' You can share as much or as little detail as you are comfortable with. Our guide on relationships and HS has more detailed advice for different situations.
Are there support groups specifically for HS caregivers?
Yes. Several Facebook groups and online forums cater specifically to caregivers and family members of HS patients. These spaces allow caregivers to share their own experiences, ask questions, and get support without the patient feeling like a burden. Our Caregiver Support page has more resources.

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Medical References

  1. [1]Kimball AB, et al. Burden of hidradenitis suppurativa: a systematic literature review of patient reported outcomes. Dermatol Ther. 2024;14(1):207-228. PubMed
  2. [2]Jemec GBE. Hidradenitis suppurativa. N Engl J Med. 2012;366(2):158-164. PubMed