The Desmoid Project

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The Desmoid Project

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07/25/2025

At The Desmoid Project, we know this quote rings true for so many living with desmoid tumors.

This path can feel invisible to the outside world—navigating doctors who don’t understand, the ache of uncertainty, the toll it takes on your body, your bank account, your relationships… and your spirit.

Grief is part of this journey. Not just once, but over and over. Grieving the life you had, the plans that shifted, the energy you lost just trying to survive the day. That grief is real. And so is your strength.

You don’t have to carry it all alone.

We’re here. Whether you’re newly diagnosed or decades in, in treatment or in limbo, feeling strong or falling apart—we hold space for all of it, and all of you.

You are seen. You are valid. You are part of a community that gets it. 🫶

07/21/2025

Feeling overwhelmed? Try this simple reset.
�When stress builds, our bodies need a way to signal safety again — and this breathing technique can help.

The physiological sigh is a science-backed tool to quickly calm your nervous system.

Just follow these steps:
1️⃣ Take a long nasal inhale�2️⃣ Add a short nasal inhale on top�3️⃣ Release a long exhale through the mouth with a sigh

Repeat 1–3 times. That’s it.

We’re sharing tools like this as part of our mission to support those living with desmoid tumors — because healing isn’t just medical, it’s mental and emotional too.

07/14/2025

It’s easy to get caught in the anxiety spiral — especially when you’re living with uncertainty, chronic pain, and the constant question marks that come with a desmoid diagnosis.

Our brains are wired to protect us, but sometimes that means looping thoughts, fear of what’s next, and worst-case scenarios on repeat. That spiral? It can feel never-ending.

But here’s something powerful: one of the best ways to interrupt that anxiety spiral is to activate the other side of your brain — the creative side.
Painting. Writing. Rearranging a room. Doodling. Singing off-key. Journaling. Playing with color. Moving your body to music. Whatever creativity looks like for you — it pulls you into the present and offers your nervous system a much-needed exhale.

Let’s start choosing the creativity spiral instead. One small, curious, creative moment at a time. 💙

07/11/2025

Living with a desmoid tumor can be isolating. It’s a diagnosis most people have never heard of. The decisions are complex. The pain is often invisible. And explaining it all? Exhausting.

But your journey doesn’t need to be understood to be valid.
It’s real. It’s hard. And it’s yours.

To every desmoid patient walking this path:
You don’t owe anyone an explanation.
You owe yourself care, compassion, and community.

🫶 Follow to stay connected.

07/07/2025

A body scan is a mindfulness practice where you gently bring your attention to different parts of your body, noticing sensations without trying to change anything. It’s about tuning in, not fixing — observing tension, pain, calm, or even numbness with compassion and curiosity.

Body scans can reduce stress, ease anxiety, and help you reconnect with yourself, especially when you’re living with chronic illness or trauma. It’s a simple, powerful way to listen to your body and honor what it’s been through.

Start at your toes, move slowly upward, breathe deeply, and notice. You don’t have to do it perfectly — you just have to show up. 💙

07/04/2025

Living with a desmoid tumor often means battling something most people have never heard of. No roadmap. No easy answers. Just persistence through pain, scans, uncertainty — and the emotional weight that comes with it.

To every desmoid patient quietly enduring the hardest days: Your strength is not invisible to us. We see you. We’re with you. And we’re building a community where your story matters.

🫶

06/26/2025

In the desmoid tumor community, we often meet each other in life’s most vulnerable chapters. And yet, it’s in those quiet moments of shared understanding—when someone sees your pain and simply stays—that true connection is born. This quote from Henri Nouwen reminds us that healing isn’t always about fixing—it’s about presence, compassion, and being held through it.

Tag someone who’s impacted your journey in a positive light more ways than one.🫶♥

06/23/2025

What is interoception?

It’s your brain’s way of reading your body’s internal signals. Think:
➡️ hunger
➡️ thirst
➡️ pain
➡️ temperature
➡️ heart rate
➡️ even emotions.

Interoception is like your body’s dashboard — helping you know when something’s off before it becomes overwhelming.

But for many people living with a desmoid tumor, interoception can feel scrambled.

Pain may become constant. Fatigue might go unnoticed until you crash. It’s easy to disconnect when your body feels like a battleground.

The first step? Awareness.

Building interoceptive awareness can help you recognize your limits, advocate for care, and reconnect with your body — gently, and on your terms.

You are not broken.
You are learning a new way of listening.
And we’re with you.

06/19/2025

To anyone feeling isolated in your diagnosis: you are not alone here. The truth is, we’ve learned that healing doesn’t just happen inside doctor offices, hospitals and MRI rooms —it happens in conversations, shared experiences, and showing up for each other. This community was built so we don’t have to carry the weight alone. 🫶

06/06/2025

Navigating life with a desmoid tumor often means adapting to change—new scans, new emotions, new beginnings. It’s overwhelming at times. But even in the chaos, there’s strength in the simple act of showing up for yourself.

You don’t have to do it alone. We see you. We’re with you. 🫶

05/30/2025

Some days, it’s hard to show up as yourself—especially when you’re carrying so much. But in this space, there’s no need to explain, pretend, or perform. You belong, exactly as you are. And that… is everything. 💚

Address

Port Angeles, WA

Website

http://www.thedesmoidproject.org/

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