Getting the Better of Endometriosis

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Getting the Better of Endometriosis Educating, advocating, and connecting policy, research, and patient voices to transform endometriosis care.

Yesterday, I had the honor of speaking on the Federal Policy panel at the Colorado Rare Disease FairThis opportunity exi...
10/15/2026

Yesterday, I had the honor of speaking on the Federal Policy panel at the Colorado Rare Disease Fair

This opportunity exists because of Bridget Dandaraw-Seritt and Advocates for Compassionate Therapy Now. I met Bridget in February, and she connected me with a rare-disease community I am grateful to be part of locally. Thank you, Bridget, ACT Now, and the Colorado Rare Disease Coalition for creating space for these conversations. I cannot believe I forgot to get a picture with her at this event. I am excited about what we can build locally so this community is seen, heard, and acknowledged.

My panel message began with one truth ⬇️

✨️Access begins with believing the patient✨️

When patients are not believed, that disbelief follows them through records, referrals, testing, coverage, school, work, relationships, and every attempt to seek help.

I shared how my physical illness was dismissed and blamed on my mental health. That disbelief escalated into psychiatric institutionalizations and years of harm. What began as not being believed became a 16+ year buildup that nearly cost me my life.

That history helped inspire the framework I independently developed through advocacy and patient-led research ⬇️

B.R.I.D.G.E.
✨️ Believe lived experience.
✨️ Record it.
✨️ Integrate it.
✨️ Design better systems.
✨️ Generate measurable change.
✨️ Elevate others.

My original research posters from American & Global Congress of Endometriosis Subspecialists was a connection I used, including more than 30 patient-created artworks and 174 survey responses. Together, they show that chronic illness reaches beyond the exam room into education, employment, relationships, family life, and community participation.

We also discussed affordability beyond medication costs and how federal policy shapes research, coding, reimbursement, coverage, workplace protections, and patient representation.

Afterward, people approached me about endometriosis and advocacy. Several also encouraged me to pursue governor-appointed boards and commissions in Colorado.

Believing the patient is the beginning.
What we do next is the real test.

Today gave me one of those unexpected moments that reminds me why showing up matters.Before my Federal Policy panel at t...
10/14/2026

Today gave me one of those unexpected moments that reminds me why showing up matters.

Before my Federal Policy panel at the Colorado Rare Disease Fair , William Switzer told me he planned to attend. I thought he meant virtually. Then, during the event, I looked across the room and suddenly realized he was sitting there in person.

Afterward, we spoke about chronic illness, patient advocacy, public policy, and creating more local partnerships. He told me that, win or lose, he is in my corner. He also offered to help connect me with people in the Lakewood arts community, where I hope to continue bringing together art, lived experience, research, and advocacy.

This is not a formal political endorsement. It is recognition of what it means when someone seeking public office shows up, listens, and asks how they can help.

Rare disease, chronic illness, disability, women’s health, and healthcare access should never belong to only one party. These conversations need people from every side, every level of government, and every economic background. Whether someone is wealthy or struggling, newly diagnosed or disabled for decades, every person deserves to be believed and represented.

I am willing to sit down with any candidate, elected official, public servant, organization, or community leader who approaches this work in good faith and wants to help patients create meaningful change.

Thank you, William, for showing up and listening. This is how partnerships begin.

Come join me virtually at the Colorado Rare Disease Fair today, for free! 💛I’ll be speaking during the Federal Policy pa...
10/13/2026

Come join me virtually at the Colorado Rare Disease Fair today, for free! 💛

I’ll be speaking during the Federal Policy panel at approximately 2:10 PM Mountain Time / 4:10 PM Eastern Time.

I’ll be discussing why healthcare access begins with believing patients, how lived experience can become research and evidence through data collection and art, and how patients can help shape federal policy. My two original research posters will also be highlighted during the panel!

Register here:
https://rarediseasefair.org/

Registered attendees will receive access to the virtual event. I cannot share the private Zoom link publicly, but if you register and need help finding the viewing information, send me a message and I’ll help however I can.

I would love to see some familiar names joining from Colorado and across the country. Today is a big day, and I’m incredibly honored to have this opportunity.

✨ BELLY BUTTON ROLL CALL ✨Mine has been unusually itchy and irritated around my surgical scars. The strange part is that...
10/13/2026

✨ BELLY BUTTON ROLL CALL ✨

Mine has been unusually itchy and irritated around my surgical scars. The strange part is that it has already been one year and two months since the last surgery

But my scars have always healed a little differently. They sometimes become irritated, itchy, raised, or otherwise weird long after the original incision has closed. With Ehlers-Danlos Syndrome affecting collagen and connective tissue, I often wonder how much that influences the way my body scars and continues healing.

This little belly button has been cut through, stitched, reopened, and changed by multiple surgeries, about 9 to be exact, including my gallbladder removal way before my endo diagnosis. It may not look the way it once did, but it carries a weighted part of my story.

Then I started thinking about how many of us have scarred, stretched, reshaped, off-center, or completely reconstructed belly buttons after surgery, pregnancy, illness, weight changes, or simply living life.

So let’s create a belly button thread. 😂💛

If you feel comfortable, share a picture of yours in the comments and tell us a little about its story. No perfect stomachs required. No explanation required either.

Just real bodies, lived-in bellies, weird collagen, and the beautiful little marks we carry.

Please keep comments kind. Bodies are not invitations for judgment.....or any sort of invitation at that 💁‍♀️

Successful day at Colorado Rare Disease Fair and then completed my training for Ghost City Tours 🤌✨️Tomorrow I speak on ...
10/13/2026

Successful day at Colorado Rare Disease Fair and then completed my training for Ghost City Tours 🤌✨️

Tomorrow I speak on a combined federal policy panel about lived experience and believing. 🙏

I host my first official ghost tour on Thursday and the started me heavy with the pub crawl. Pretty excited 🤗

👻🎗✨️🖤💖

Colorado Rare Disease Fair day one, Research Day! Tomorrow is my Federal Policy Panel around 2pm ✨️
10/12/2026

Colorado Rare Disease Fair day one, Research Day! Tomorrow is my Federal Policy Panel around 2pm ✨️

I cannot believe I almost forgot to share this. 🥹FLARE Art+Resources for Endo • Gallery was formally recognized in the C...
10/09/2026

I cannot believe I almost forgot to share this. 🥹

FLARE Art+Resources for Endo • Gallery was formally recognized in the Congressional Record by Congresswoman Brittany Pettersen Rep. Brittany Pettersen , and my own advocacy work was specifically recognized within it.

The record names me as a health policy advocate and artist who has “worked tirelessly to connect local leadership with the growing national movement” to improve endometriosis education and healthcare.

Government outreach and advocacy development were the work I brought into FLARE. They are also part of the work I have been building for years through patient education, federal advocacy, art, policy, and lived experience.

My focus remains clear moving forward....making people living with women’s health conditions, chronic illness, rare disease, disability, and invisible illness feel seen in spaces that were not designed with them in mind.

This work existed before FLARE, and it will continue far beyond it.

You can hear more about my work and B.R.I.D.G.E. framework at the Colorado Rare Disease Fair on October 13. 💛

10/09/2026

Three weeks ago today, I stood in a room filled with artists, advocates, supporters, and people living with endometriosis and other chronic conditions called FLARE Art+Resources for Endo • Gallery

What you cannot see in this video is what happened only minutes before I spoke.

I was actively flaring. You can see some of the bloating in this dress, although the dress itself was absolutely to die for. 💛

Gross but honest warning....I had quite literally just sh*t myself because of the bowel dysfunction I experience alongside endometriosis, pelvic organ prolapse, and Ehlers-Danlos Syndrome.

I went to the bathroom, cleaned myself up, prayed my dress had survived, and returned to the room. Thankfully, it had. This happens more often than people realize, and I am still learning how to stay prepared for it.

I briefly explained that I was flaring and might need to come and go from the bathroom. Then I looked toward the artists because I wanted them to know that I saw them.

I saw what it may have taken to create their work and bring it into that room while living with pain, fatigue, unpredictable symptoms, and other conditions. I wanted to acknowledge not only what they created, but what they carried while creating it.

Behind the dress and the public moment, my body was doing what chronic illness so often does...disrupting everything without warning. Still, I cleaned myself up, adjusted the plan, and found my way back into the room.

My own lived reality was part of why I was there.

My purpose was to help make these experiences visible, recognize people creating while hurting, and honor work that came from bodies carrying more than anyone could see.

That was my intention behind what I contributed, and it will remain the focus of what I continue building through my B.R.I.D.G.E. framework.

Thank you, Holly Sanneman for sending me this moment through all the chaos. Hearing it three weeks later reminded me exactly why I keep doing this work.

There is still so much more work to be done. 🥹💛

10/09/2026

Cute? Not at all. Important? The MOST important.

Endometriosis is a chronic, systemic, full body inflammatory disease. Nothing about that is cute and makes you want to zoom in and say “aw!”

When something cute pops up while scrolling, it’s bound to get a like, comment, share or re-post. It can be a little fuzzy animal, a puppy, a newborn, flowers, a beach - or whatever it is that you find “cute.”

Posts about endometriosis, surgery, lesions, information, etc tend to get scrolled past unless there’s something appealing tied to it. Consider this the cutest endometriosis post you’ve seen today!

Let’s normalize making it cute to react to Endo posts the way we do when it’s a cute little fuzzy animal 🥰

Stay tuned for our new series ✨Endometriosis IS and ISN’T✨

FLARE is growing, and there is room for you! We're welcoming sponsors, partners, healthcare professionals, foundations, ...
07/07/2026

FLARE is growing, and there is room for you!

We're welcoming sponsors, partners, healthcare professionals, foundations, and community collaborators who want to be part of something different.

This September in NYC, we're creating a space where patient artists lead the conversation. Where lived experience meets education. Where the endo community shows up, all together.

Three ways to build with us:
💛 Support community access
💛 Invest in education
💛 Champion patient artists

Partnership interest form is live.
Ticket waiting list is live.

Venue: (IG) ✨️

flareendo.org

Let's make this happen.
Comment or reach the DMs with any questions or for direct links. 🔥

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