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The Healing Blossom
Join me on my healing journey!
I’m raising awareness about very underdiagnosed medical conditions.
Today is Dercum’s Disease Awareness Day (April 4th).![]()
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It took 27 years for me to be diagnosed.![]()
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Twenty. Seven. Years.![]()
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That’s not okay.![]()
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And that’s exactly why awareness matters.![]()
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Dercum’s Disease is rare, poorly understood, and often dismissed.![]()
Many of us go years—sometimes decades—being misdiagnosed or told nothing is wrong.![]()
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Dercum’s doesn’t usually show up alone.![]()
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It can exist alongside other connective tissue disorders like Lipedema and Ehlers-Danlos Syndrome (EDS)—both of which I also have, but are not as rare and still took decades to get diagnosed.![]()
This disease affects my daily life in ways most people don’t see.![]()
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Pain is unpredictable, and triggered by things most people wouldn’t think twice about:![]()
• Stress![]()
• Injury![]()
• Illness (like COVID)![]()
• Surgery![]()
• Even sitting on a hard surface![]()
• Imbalances in electrolytes and minerals![]()
• Certain plant foods![]()
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My fascia tightens, my body stiffens, and it can trigger what I can only describe as a “full body migraine.” Pain from head to toe. It can be mild or debilitating.![]()
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And then there are the lumps or lipomas, tumors...![]()
Dercum’s causes painful fatty growths throughout the body… but that clinical description doesn’t come close to what it actually feels like.![]()
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These aren’t just “lumps.”![]()
They ache.![]()
They burn.![]()
They throb.![]()
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Sometimes they feel like bruises you can’t see.![]()
Sometimes they feel like glass under the skin.![]()
Sometimes like a knife in your back.![]()
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If you’ve seen me in person, you’ve seen what this disease has done to my arms and legs. They’ve been reshaped by these painful masses.![]()
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And what you can see… is only part of it.![]()
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For 27 years, I lived with pain without understanding why.![]()
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🧡 See the comments for a link to my story![]()
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#DercumsDisease #DercumsAwareness #RareDisease #ChronicPain #InvisibleIllness #Lipedema #EDS #TheHealingBlossom #ToxicSuperfoods
April 4th is Dercum’s Disease Awareness Day 🧡![]()
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What is Dercum’s disease?![]()
Dercum’s disease is a rare disorder that causes multiple, painful fatty growths called lipomas. These growths can press on nearby nerves, leading to chronic pain that can deeply affect daily life. Dercum's most often occurs in adults and is more common in women![]()
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Today is about compassion, awareness, and connection.![]()
We stand with everyone living with Dercum’s. ![]()
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Your experiences matter, your voices matter, and you are not alone 🧡![]()
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Help us spread awareness by sharing this post and learning more through the Fat Disorders Resource Society
I’m excited to share that my FDRS presentation from the March conference is officially on YouTube. This presentation meant a lot to me because I got to share a brief snippet of my story — the long journey through Lipedema, chronic pain, MCAS, SPS, hypermobility, oxalates, and more. In the talk I listed all the disorders I’ve been diagnosed with… although one more was added later: Dercum’s Disease.![]()
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But what most people don’t know is what it took just to get to that stage.![]()
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For weeks I focused on preparing and resting as much as possible. Good sleep is the only thing that keeps my mind clear — without it, I lose my words, something I’ve struggled with all my life. I wanted to show up present, grounded, and able to communicate the story I’ve waited years to tell.![]()
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Then, days before my trip, my 4-year-old created a “booby trap” in our walk-in pantry. I fell hard — ribs, hip, knee — right onto the art cart and a puddle of glue. I squeezed in an appointment with my osteopathic manual therapist, right before my flight, but she warned me I’d be in pain. She was right. The flight was brutal, and I sat in intense pain the entire way.![]()
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When I finally got to my hotel, I began feeling sick and struggling to breathe. Later, I found black mold in the room. At midnight I begged to switch rooms, and the only option was one with no curtains, right next to a bright intersection. I took it anyway. I didn’t sleep at all that night.![]()
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The next day they moved me again, but that’s when oxalate dumping started — the ribs I injured began releasing gritty crystals through my skin, causing intense itching. Another mostly sleepless night.![]()
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By the morning of my presentation, I was exhausted, in pain, itchy, and running on almost no sleep… but I still showed up and delivered. Not perfectly — there are things I would’ve said differently if I’d had rest — but with the most heart and truth I could give in that moment.![]()
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Chronic illness doesn’t pause for important days. We carry it with us into every space — even onto stages. And sometimes simply showing up is the victory.![]()
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Here is my FDRS presentation. Thank you to everyone who’s walked beside me on this healing journey. 🌿💛 Link in comments