HS Warrior Stories

04/01/2026

What to track between dermatologist visits if you have HS 👇

Most people with Hidradenitis Suppurativa are never really told what to track between appointments… and that can make it harder to advocate for yourself, spot patterns, or explain what’s actually happening.

The reality is: Your doctor sees a snapshot.You live it every 👏day👏.

If you’re dealing with HS, it can help to track things like:
* pain level
* drainage / wound changes
* new flares or tunnels
* triggers and patterns
* what treatment is or isn’t helping

You do not need to track perfectly. Even simple notes can help you notice patterns, prepare for appointments, and have more productive conversations with your doctor.

We also created a free HS tracking spreadsheet to make this easier.
If that would help you, it’s linked in our bio.

💜 Save this before your next appointment
💬 Comment TRACKER if this kind of content is helpful
📤 Share with someone navigating HS

03/20/2026

When Jeremy had surgery for Stage III hidradenitis suppurativa, we thought we were prepared.

We weren’t.

Some of these products were recommended by his care team. Others we discovered the hard way after trial and error during recovery (like tape, ugh!).

If you or someone you love is preparing for HS surgery, having the right supplies ready can make those first weeks a lot easier.

This carousel shares the things that ended up being part of Jeremy’s wound care routine and recovery process. We hope you find this helpful. We want to share products we use without sounding “salesy”...not our vibe.

Link in bio to our Amazon storefront if you want links to everything you see. Holler with any questions, Warriors! 💜

03/13/2026

Today we finally get to share “The Beast I’ve Become.” This song is for you, Warriors. 💜

What started as a simple idea between two musicians connected through the HS community turned into something much bigger.

Music has always been a way for people to process what words sometimes can’t. For those of us living with HS, that can be especially true, which is one of the reasons we started a few years back.

This song is one small example of what can happen when Warriors connect, create, and support each other. We hope it resonates with you.

We also hope this collab inspires you to connect with other HS Warriors from around the world on passions you share.

Finally, please re-share, send this to another Warrior, and let us know what you think in the comments. 💜

https://youtu.be/FXJ0HX6bOY8?si=srlPqhilQ_AN4qQi

“The Beast I’ve Become” is a collaborative song created for the hidradenitis suppurativa (HS) community.Specifics:- The music is completely original (no AI) ...

02/20/2026

Today is National Caregivers Day. ❤️‍🩹

Hey friends, Jillian here. I’ve spent many seasons of my life in the caregiver role. And what I’ve learned is this:

Caregiving isn’t about being heroic. It’s about being present.
It’s the quiet coordination.
The steady hand.
The consistency when flares don’t resolve quickly.
It can be isolating. It can be exhausting. And it can also be one of the deepest expressions of love.

If you’re caring for someone through chronic illness, recovery, or grief…I see you. I understand the weight.

And your care and support matters more than most people will ever know.

If someone is caring for you, share this and please tell them ‘thank you’ today.

No one navigates this alone.💜

02/19/2026

Some people think Hidradenitis Suppurativa (HS) is “just a skin condition.”

But daily life tells a different story:
- Planning clothes around flares.
- Canceling last minute.
- Avoiding certain movements.
- Managing pain quietly while still showing up.

For many living with HS, this isn’t occasional. It’s daily.

Research from the National Institutes of Health confirms that “HS significantly impacts daily functioning and work life”.

But beyond the data, there’s our lived experience.

Understanding changes everything. Believing people changes even more.💜

02/05/2026

Warriors! I’ve been having some pains in my right arm while trying to do basic stretches for this surgery recovery. Been hindering me from extending my right arm all the way in certain circumstances. Followed up with my surgeon and come to find out what I described to him is called Axillary Web Syndrome. Usually found in people who’ve had breast cancer surgery. We both found this fascinating as he does MANY surgeries for HS but had no idea what this was I was describing to him. He also mentioned that this def should be talked about more.
Here’s what a quick google search came up with:
*
“Axillary web syndrome (AWS), also known as cording, sometimes develops as a side effect of sentinel lymph node biopsy (SLNB) or axillary lymph node dissection (ALND). Both procedures involve removing just a few (SLNB) or many (ALND) of the axillary, or underarm, lymph nodes. Most people with breast cancer need to have at least one of these surgeries. Scar tissue from surgery to the chest area to remove the cancer itself also can contribute to cording”
*
💫

01/22/2026

Tube #2 OUT 🎉

Another wound vac tube down and one big step forward in Jeremy’s recovery.
This is just a short preview. We’ll be sharing a longer reel soon that walks through more of the recovery process.

For now, we’re celebrating this win the only way that makes sense…🌮🌮🌮 TACOS 🌮🌮🌮

Progress isn’t always loud, but today it feels pretty damn good.
Thank you for all the love, encouragement, and check-ins. More updates soon 🤍

01/15/2026

First follow up complete! Looking good y’all!
Thank you all for being amazing and for thinking of me during this time. Y’all are everything.

01/05/2026

Today’s the day…Jeremy is getting wide excision surgery on both armpits. It’s been a journey to get here, and despite being nervous, the idea of less HS pain is exciting.

Please join me in wishing Jeremy best wishes and speedy and relatively painless recovery. I’ll keep you posted on how he does, Warriors. 💜

01/04/2026

Facing wide excision HS surgery brings up fears that are hard to articulate.
Pain. Medications. Wound care. Healing time. Mobility. Work.

Jeremy is carrying ALL of these worries as he heads into surgery tomorrow, and we know he’s not the only one who has felt this way. We’re sharing this to name the fears people often keep to themselves, and to remind anyone facing HS surgery that what they’re feeling is valid and shared. You are not alone, Warriors.💜💪




01/04/2026

Y’all…..HEEEEELLLPPP!
🤣🫠

11/21/2025

🇯🇵💜 Now that we are home from Japan, we want to share what we learned about the HS landscape there.

It also felt important to give everyone clear context before we release our Japan HS Warrior Story. HS in Japan looks very different from what many of us see in the U.S., and understanding these differences helps us support the global HS community in a more informed way.

Here are five key things to know about HS in Japan:
1. HS is called Kanōsei Kansen-en (化膿性汗腺炎). Most patients and many clinicians have never heard the term. HS was historically mislabeled as a buttock infection, which caused years of confusion and misdiagnosis.
2. HS is mostly diagnosed in men in Japan. This is the opposite of the U.S. Many women delay care due to modesty, stigma, and embarrassment around intimate-area flares.
3. The buttocks are the primary flare site. This is very different from Western patterns. Cultural factors likely influence what flares are reported or examined.
4. HS severity is much higher in Japan. More than 40 percent of cases are Hurley Stage 3. Late diagnosis plays a major role.
5. Japan needs 10 key actions to better support its HS community. Clinician education, awareness campaigns, digital resources, support groups, and a national registry are only the beginning. We were encouraged to see progress at both dermatology and pharmaceutical levels, but there is still a long way to go.

As we film HS Warrior Stories around the world, our goal is not just to share lived experiences. We want to collect meaningful insights, patterns, and data that can help the entire HS community. No gatekeeping. Our work serves patients, clinicians, advocates, and global partners who share the mission of improving HS care and awareness. Every country teaches us something valuable, and Japan taught us so much.

Stay tuned for our Japan Warrior Story. It is powerful, important, and full of courage. Thank you for being part of this journey. 💜

化膿性汗腺炎 ハイドラナイティス 難病コミュニティ 皮膚科疾患 HS患者サポート