Three Hidradenitis Suppurativa Patient Support Groups To Join Online

In my experience, connecting with our community is one of the most pivotal parts of healing as a Hidradenitis Suppurativa (HS) patient. Knowing you aren't the only patient with boils all over your body is somewhat comforting and frightening at the same time. The sense of comfort comes in when you realize you finally have others you can talk to. It may be frightening because of the realization that there are others who are also suffering.

One of the beautiful things about being an advocate is that I get messages daily from warriors who say they had no idea there were others living with the condition. I feel the joy they have when they've found a communal connection. That's why I have compiled a list of three HS patient support groups to join online.

Hope For HS

Hope for HS is a 100% volunteer, grass-roots, patient and caregiver-directed non-profit organization, supporting and advocating for HS patients since 2013. They are one of the first HS support networks with groups across the country working to raise awareness through events, speaking engagements, and national proclamation campaigns to empower members of the HS community to get involved and create change for patients everywhere.

Before the global pandemic, Hope For HS hosted in-person meetings at various chapters across the country. Now, they offer online meetings so patients are still supported even in the midst of isolation. Follow Hope For HS on Instagram and Facebook or visit their website for more information.

HS Connect

HS Connect's mission is to provide resources to patients which include but is not limited to mental health, clinical trials, HS specialists, and more. Denise, Brindley, Ghazal, Roni, Kayla, and Jillian are advocates who devote their time and energy to these efforts. Between the six members, there are 30+ years of advocacy experience and 100+ years of living with HS.

In addition to their website, they also have a private Facebook group, Hidradenitis Suppurativa Unique Fun Facts - HSconnect Global Support Group, where patients interact by talking about their experiences, victories, and battles. For access to HS Connect resources, visit their website.

My Gold Lining

My Gold Lining is my baby. It was birthed out of my own shame and isolation. What started as a documentary blossomed into awareness and advocacy summits, documentaries, and TV programming. This has enabled patients and caregivers to connect via social media to summits, physicians, and resources that weren't previously available.

I am now in the process of creating a non-profit for My Gold Lining so we can expand the work we are doing and continue to positively impact the community. This year, we are bringing back the HS virtual summit with new topics, faces, and prizes. It's going to be bigger and better than ever. Follow My Gold Lining Doc on Twitter, Instagram, Facebook, and YouTube for more updates.