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5 months ago
Imagine normal fat tissue that becomes “metabolically sick and diseased”.

It is no longer smooth, structured, metabolically active/energy storing and does not respond to exercise or weight loss.

Instead, it becomes inflamed, restructured, fibrotic/thickened, growing into lumps (ranging in size from a pea to a baseball) interwoven with strangled blood vessels, nerves and lymphatic vessels (aka “murder fat”).

It’s extremely painful and causes widespread immune activation, constant inflammation, vascular strain, microclots, cell necrosis, nervous system dysregulation, etc etc....resulting in widespread downstream health effects.

When you try to exercise past a threshold, you end up inflaming the tissue further and depriving it of blood flow and oxygen, resulting in a deep, burning pain so severe you can barely place a foot on the floor.

Imagine pushing it aside while diagnosis pile up and then waiting a year to see the world’s leading specialist/endocrinologist on the under-recognized disease.

Imagine she uses specialized thermal imaging and ultra detailed ultrasound and exclaims “Wow, wow, wow - look at this!” shaking her head multiple times during your scans.

A respected doctor who sees thousands of patients around the world tells you -

 “I’ve never seen anything quite like what is happening in your body. There is no doubt you have a complex, unique connective tissue disorder combined with severe immune dysregulation, diseased/fibrotic fat, and concerning vascular implications. It is not supposed to look like that.”

“There is no doubt you have Dercum’s Disease.”

One more piece to the insanely complex health puzzle that took a healthy, 107 lb, muscular, active 33 year old female and broke every system in her body.

#dercumsdisease 

Continued in comments
10
Posted On: May 6th 2026, 10:37 pm
Imagine normal fat tissue that becomes “metabolically sick and diseased”.

It is no longer smooth, structured, metabolically active/energy storing and does not respond to exercise or weight loss.

Instead, it becomes inflamed, restructured, fibrotic/thickened, growing into lumps (ranging in size from a pea to a baseball) interwoven with strangled blood vessels, nerves and lymphatic vessels (aka “murder fat”).

It’s extremely painful and causes widespread immune activation, constant inflammation, vascular strain, microclots, cell necrosis, nervous system dysregulation, etc etc....resulting in widespread downstream health effects.

When you try to exercise past a threshold, you end up inflaming the tissue further and depriving it of blood flow and oxygen, resulting in a deep, burning pain so severe you can barely place a foot on the floor.

Imagine pushing it aside while diagnosis pile up and then waiting a year to see the world’s leading specialist/endocrinologist on the under-recognized disease.

Imagine she uses specialized thermal imaging and ultra detailed ultrasound and exclaims “Wow, wow, wow - look at this!” shaking her head multiple times during your scans.

A respected doctor who sees thousands of patients around the world tells you -

“I’ve never seen anything quite like what is happening in your body. There is no doubt you have a complex, unique connective tissue disorder combined with severe immune dysregulation, diseased/fibrotic fat, and concerning vascular implications. It is not supposed to look like that.”

“There is no doubt you have Dercum’s Disease.”

One more piece to the insanely complex health puzzle that took a healthy, 107 lb, muscular, active 33 year old female and broke every system in her body.

#dercumsdisease

Continued in comments
Comments (10)
lparrish3873 5 months ago

lparrish3873

🙏🏼🙏🏼🙏🏼❤️

crumpet6511 5 months ago

crumpet6511

I cannot believe your continuing positivity in the midst of all you have and are continuing suffer. You are the strongest woman I know. God’s got this and God’s got you.

just.traesi 5 months ago

just.traesi

I’m grateful to know every version of you, Kaisa. You’ve always been and still are an inspiring woman. I just hope there will be new treatments that help with your hardest symptoms so you can have way more good days ahead. ❤️❤️❤️

gizsmith 5 months ago

gizsmith

All who know you see your beauty! Your body may have changed but your beauty has only increased

angaleejackson 5 months ago

angaleejackson

I’m so sorry, friend 💔

morethaneds 5 months ago

morethaneds

Beautiful both inside and out!!! Love you so much my friend 💕💕💕

scifiangie 5 months ago

scifiangie

You’re still just as beautiful as ever. I’m praying for you, my friend! ❤️🙏🏻❤️

lizespersen 5 months ago

lizespersen

Dercums and lipedema dr Karen Herbst

chronic_lee 5 months ago

chronic_lee

Yet, what can you do? I can still take short walks around beautiful catholic 18th century churches in sunny Tucson before my appointment, soaking up the reverence, the spirit of over 200 years of worship. I can still go on short hikes, reveling in every stunning detail nature offers. I can. I may pay for it....but I can do it. I may end up in medical emergencies just because the weather changes....but I have a miracle medicine to help save me. I may wail in unbelievable agony over and over again for hours upon hours....but the agony eventually ends. I may have to lay in the hotel room/bedroom/car and miss out because I've pushed too far....but at least I tried. I may still pass out and convulse because I can't get blood flow to my brain....but at least my brain keeps fighting. I may look overweight and puffy and no longer pretty....but I can still smile and I can still be kind...and that's prettiest anyway. I may only be able to eat a few bites of food at meals....but I can still eat. I may have to rethink life, goals, dreams and redefine success...redefine me....but I can pivot, I can find new dreams. I can. And I will. Because God's got this.

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