Lipodystrophy with Chavey Chavez
@lipodchaveychavez.bsky.social
Chavey Chavez
Nursing student • Rare disease warrior • Advocate
I’m not fat. My organs are. Living with FPLD3 lipodystrophy. I turn struggle into story, advocacy into action, and stigma into strength.
Nursing student • Rare disease warrior • Advocate
I’m not fat. My organs are. Living with FPLD3 lipodystrophy. I turn struggle into story, advocacy into action, and stigma into strength.
When you’re red-faced, out of breath, and sitting in a room full of strangers… Instead of panicking, you smile a little.
That’s growth.
I have had to learned how to walk the last part of the journey with myself and I’m okay there. #lipodystrophy #advocacy #nursingstu
That’s growth.
I have had to learned how to walk the last part of the journey with myself and I’m okay there. #lipodystrophy #advocacy #nursingstu
January 8, 2026 at 5:42 PM
When you’re red-faced, out of breath, and sitting in a room full of strangers… Instead of panicking, you smile a little.
That’s growth.
I have had to learned how to walk the last part of the journey with myself and I’m okay there. #lipodystrophy #advocacy #nursingstu
That’s growth.
I have had to learned how to walk the last part of the journey with myself and I’m okay there. #lipodystrophy #advocacy #nursingstu
Same condition. Same prescription.
Very different price.
$210 for a Dexcom isn’t a want—it’s how I manage my disease. #lipodystrophy #advocacy #type2diabetes
Very different price.
$210 for a Dexcom isn’t a want—it’s how I manage my disease. #lipodystrophy #advocacy #type2diabetes
January 7, 2026 at 2:59 AM
Same condition. Same prescription.
Very different price.
$210 for a Dexcom isn’t a want—it’s how I manage my disease. #lipodystrophy #advocacy #type2diabetes
Very different price.
$210 for a Dexcom isn’t a want—it’s how I manage my disease. #lipodystrophy #advocacy #type2diabetes
Closing out 2025 in awe. I am still confirming details, but hopeful to attend Rare Disease Week on Capitol Hill with the EveryLife Foundation to sharing my story, advocating in DC, and representing my state. Grateful, humbled, and ready. #lipodystrophy #EverLifeFoundation#MichiganRare
December 31, 2025 at 7:15 PM
Closing out 2025 in awe. I am still confirming details, but hopeful to attend Rare Disease Week on Capitol Hill with the EveryLife Foundation to sharing my story, advocating in DC, and representing my state. Grateful, humbled, and ready. #lipodystrophy #EverLifeFoundation#MichiganRare
Refill day hits different.
This is what rare disease treatment looks like. #lipodystrophy
This is what rare disease treatment looks like. #lipodystrophy
December 15, 2025 at 3:11 PM
Refill day hits different.
This is what rare disease treatment looks like. #lipodystrophy
This is what rare disease treatment looks like. #lipodystrophy
Reposted by Lipodystrophy with Chavey Chavez
Myth: Genetics don’t matter.
Truth: DNA shapes health, legacy, & change. With FPLD3, my genes tell a story you can’t see. But science can learn from it. #lipodystrophy #GeneticsMatter #Raredisease #ChaveyChavez #advocacy
Truth: DNA shapes health, legacy, & change. With FPLD3, my genes tell a story you can’t see. But science can learn from it. #lipodystrophy #GeneticsMatter #Raredisease #ChaveyChavez #advocacy
September 2, 2025 at 3:09 AM
Myth: Genetics don’t matter.
Truth: DNA shapes health, legacy, & change. With FPLD3, my genes tell a story you can’t see. But science can learn from it. #lipodystrophy #GeneticsMatter #Raredisease #ChaveyChavez #advocacy
Truth: DNA shapes health, legacy, & change. With FPLD3, my genes tell a story you can’t see. But science can learn from it. #lipodystrophy #GeneticsMatter #Raredisease #ChaveyChavez #advocacy
Maliki always knows when I have had a long day. He talks and I try to listen. Behind the crazy hair and tired eyes. I am still showing up and fallowing through. Because life with a rare disease isn’t always polished, but it’s real. #Lipodystrophy #Advocacy #chronicillness
October 1, 2025 at 2:55 AM
Maliki always knows when I have had a long day. He talks and I try to listen. Behind the crazy hair and tired eyes. I am still showing up and fallowing through. Because life with a rare disease isn’t always polished, but it’s real. #Lipodystrophy #Advocacy #chronicillness
From classrooms to the Capitol. Carrying not just books, but the voices of rare disease patients and future nurses. 💛🏛️ #RareDiseaseAdvocacy #NursingStudent #ChaveyChavez
September 30, 2025 at 5:22 PM
From classrooms to the Capitol. Carrying not just books, but the voices of rare disease patients and future nurses. 💛🏛️ #RareDiseaseAdvocacy #NursingStudent #ChaveyChavez
Tomorrow I’m heading to Lansing to raise lipodystrophy voices at the State Capitol. 🏛️ #RareDisease #Lipodystrophy #Advocacy
September 30, 2025 at 4:21 AM
Tomorrow I’m heading to Lansing to raise lipodystrophy voices at the State Capitol. 🏛️ #RareDisease #Lipodystrophy #Advocacy
Week 3 of nursing school looks less like the Pinterest-perfect desk setups online and more like this papers, pens, chaos everywhere. But behind the mess is a full mind and a focused heart. #ChaveyChavez #lipodystrpoy
September 10, 2025 at 4:28 PM
Week 3 of nursing school looks less like the Pinterest-perfect desk setups online and more like this papers, pens, chaos everywhere. But behind the mess is a full mind and a focused heart. #ChaveyChavez #lipodystrpoy
I don’t just talk about healing. Do it. Grace, grit, and growth. One day at a time. This is your reminder: you’re doing better than you think.
#healingisaprocess #healingjourney #selflove #nursingstudentlife #rarediseasewarrior
#healingisaprocess #healingjourney #selflove #nursingstudentlife #rarediseasewarrior
September 6, 2025 at 3:15 AM
I don’t just talk about healing. Do it. Grace, grit, and growth. One day at a time. This is your reminder: you’re doing better than you think.
#healingisaprocess #healingjourney #selflove #nursingstudentlife #rarediseasewarrior
#healingisaprocess #healingjourney #selflove #nursingstudentlife #rarediseasewarrior
Myth: Genetics don’t matter.
Truth: DNA shapes health, legacy, & change. With FPLD3, my genes tell a story you can’t see. But science can learn from it. #lipodystrophy #GeneticsMatter #Raredisease #ChaveyChavez #advocacy
Truth: DNA shapes health, legacy, & change. With FPLD3, my genes tell a story you can’t see. But science can learn from it. #lipodystrophy #GeneticsMatter #Raredisease #ChaveyChavez #advocacy
September 2, 2025 at 3:09 AM
Myth: Genetics don’t matter.
Truth: DNA shapes health, legacy, & change. With FPLD3, my genes tell a story you can’t see. But science can learn from it. #lipodystrophy #GeneticsMatter #Raredisease #ChaveyChavez #advocacy
Truth: DNA shapes health, legacy, & change. With FPLD3, my genes tell a story you can’t see. But science can learn from it. #lipodystrophy #GeneticsMatter #Raredisease #ChaveyChavez #advocacy
What is Lipodystrophy?
August 27, 2025 at 1:45 AM
What is Lipodystrophy?
Myth Busted: Looking good ≠ feeling good. Makeup & outfits are my armor, not my health. With lipodystrophy, I may look well, but inside my body fights daily. Invisible illness is still illness. #lipodystrophy #advocacy #ChaveyChavez #RareDisease
August 27, 2025 at 1:44 AM
Myth Busted: Looking good ≠ feeling good. Makeup & outfits are my armor, not my health. With lipodystrophy, I may look well, but inside my body fights daily. Invisible illness is still illness. #lipodystrophy #advocacy #ChaveyChavez #RareDisease
I dreamed of rushing in scrubs, fridge drawer full of meds, struggling to inject. With a new semester starting, it reflects my reality: balancing nursing school + lipodystrophy. Turning it into art shows the resilience behind the struggle. #lipodystrophy #raredisease #advocacy #ChaveyChavez
August 22, 2025 at 4:01 AM
I dreamed of rushing in scrubs, fridge drawer full of meds, struggling to inject. With a new semester starting, it reflects my reality: balancing nursing school + lipodystrophy. Turning it into art shows the resilience behind the struggle. #lipodystrophy #raredisease #advocacy #ChaveyChavez
Didn’t get the summer I planned, but look what I DID: Nursing Camp ✨ Mini Symposium ✨ Myth-Busting Monday ✨ Sharing my story ✨ Rare Across America ✨ Rachor Scholarship 🙌 Advocacy = showing up + being loud 💪 #PatientAdvocacyDay
August 20, 2025 at 4:38 AM
Didn’t get the summer I planned, but look what I DID: Nursing Camp ✨ Mini Symposium ✨ Myth-Busting Monday ✨ Sharing my story ✨ Rare Across America ✨ Rachor Scholarship 🙌 Advocacy = showing up + being loud 💪 #PatientAdvocacyDay
Yesterday’s scholarship reception reminded me—dreams don’t work unless you do. 💙 Shoutout to Rachor Education Foundation + McLaren Flint Foundation for helping me make this dream happen! #lipodystrophy #ChaveyChavez #advocate #raredisease
August 20, 2025 at 2:38 AM
Yesterday’s scholarship reception reminded me—dreams don’t work unless you do. 💙 Shoutout to Rachor Education Foundation + McLaren Flint Foundation for helping me make this dream happen! #lipodystrophy #ChaveyChavez #advocate #raredisease
After a long shift, I wanted to stay home. Instead, I showed up for my scholarship ceremony & left inspired. Comfort ≠ progress. Growth comes when we push forward. #lipodystrophy #raredisease #ChaveyChavez #advocacy
August 19, 2025 at 10:27 PM
After a long shift, I wanted to stay home. Instead, I showed up for my scholarship ceremony & left inspired. Comfort ≠ progress. Growth comes when we push forward. #lipodystrophy #raredisease #ChaveyChavez #advocacy
MYTH: “Just stop eating and your lipodystrophy will get better.”
FACT: Lipodystrophy isn’t caused or maintained by not overeating. So starving myself won’t “fix” it. This is a fat storage disorder. My body can’t store fat where it’s supposed to. It ends up in my organs and muscles.
#Lipodystrophy
FACT: Lipodystrophy isn’t caused or maintained by not overeating. So starving myself won’t “fix” it. This is a fat storage disorder. My body can’t store fat where it’s supposed to. It ends up in my organs and muscles.
#Lipodystrophy
August 12, 2025 at 12:38 AM
MYTH: “Just stop eating and your lipodystrophy will get better.”
FACT: Lipodystrophy isn’t caused or maintained by not overeating. So starving myself won’t “fix” it. This is a fat storage disorder. My body can’t store fat where it’s supposed to. It ends up in my organs and muscles.
#Lipodystrophy
FACT: Lipodystrophy isn’t caused or maintained by not overeating. So starving myself won’t “fix” it. This is a fat storage disorder. My body can’t store fat where it’s supposed to. It ends up in my organs and muscles.
#Lipodystrophy
Michigan Rare Disease Symposium, February 28, 2025. @nordrare #lipodystrophy #raredisease
April 5, 2025 at 2:20 AM
Michigan Rare Disease Symposium, February 28, 2025. @nordrare #lipodystrophy #raredisease
This month, I had to wait to refill because our income took a hit, and budgeting became a whole new level of juggling.
But I’m sharing this because I know I’m not alone.
Invisible illnesses come with invisible costs. #lipodystrophy #raredisease #advocate
But I’m sharing this because I know I’m not alone.
Invisible illnesses come with invisible costs. #lipodystrophy #raredisease #advocate
April 5, 2025 at 1:53 AM
This month, I had to wait to refill because our income took a hit, and budgeting became a whole new level of juggling.
But I’m sharing this because I know I’m not alone.
Invisible illnesses come with invisible costs. #lipodystrophy #raredisease #advocate
But I’m sharing this because I know I’m not alone.
Invisible illnesses come with invisible costs. #lipodystrophy #raredisease #advocate
Basically, my body doesn’t store fat the way most people’s do, which can cause all sorts of chaos behind the scenes.
But instead of letting it define me, I went back to nursing school to decode my own mystery & become the advocate I wish I had. #lipodystrophy #raredisease #advocate
But instead of letting it define me, I went back to nursing school to decode my own mystery & become the advocate I wish I had. #lipodystrophy #raredisease #advocate
April 5, 2025 at 1:34 AM
Basically, my body doesn’t store fat the way most people’s do, which can cause all sorts of chaos behind the scenes.
But instead of letting it define me, I went back to nursing school to decode my own mystery & become the advocate I wish I had. #lipodystrophy #raredisease #advocate
But instead of letting it define me, I went back to nursing school to decode my own mystery & become the advocate I wish I had. #lipodystrophy #raredisease #advocate
Living with a rare disease can really take a toll on you  when you least expect it. These two guys really make it easier.
April 2, 2025 at 9:22 PM
Living with a rare disease can really take a toll on you  when you least expect it. These two guys really make it easier.