@chronically_lil: In the months leading up to my surgery I felt like I was barely hanging on, sick and broken. I couldn't eat, I couldn't drink, and the pain was absolutely unbearable. Most days I could barely walk due to leg pain and weakness, and all I could do was wonder if l'd survive long enough to even get to surgery for my MALS and May Thurner syndrome. I think a part of me was shocked that I had made it through the surgery! Today is rare disease day, and Vascular compression syndromes are included in this affecting 2 in 100,000 people (though their true prevalence may be higher). I share my story because these rare conditions nearly took my life, and I'm so thankful that after a long wait I finally got the help I deserved! It wasn't easy, and I had to do my own research and fight so hard to get the correct surgery! Now, 3 weeks later, I feel as though l've been given a second chance at life! I'm still living with two other compression syndromes (SMAS and Nutcracker Syndrome) but I'm already seeing so many improvements! Vascular compression syndromes deserve so much more recognition, and should be ruled out when patients are experiencing symptoms even though they are considered rare. Rare does not mean impossible!! #mals #maythurnersyndrome #vascularcompressionsyndromes #ehlersdanlossyndrome #nutcrackersydrome #superiormesentericarterysyndrome #raredisease #rarediseaseday #rarediseaseawareness
Lily Mae
Region: US
Friday 28 February 2025 17:33:48 GMT
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Skylar ..•.• :
My MALs surgen said he had a patient go home same day of surgeryD: I stayed 2 nights and by the end of the week I was back to normal activities.I was sosick of being deathly malnourished every winter
2025-02-28 18:57:45
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bea :
GOD BLESS YOU AND YOUR FAMILY
2025-02-28 23:06:08
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themadio :
I’m getting this surgery in a few weeks ❤️hugs friend
2025-03-02 10:24:19
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Heather :
The relief and realizing it was actually okay 🥺 So happy for you❤❤❤
2025-02-28 19:58:21
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nagrom🇵🇸 :
proud of you
2025-03-04 03:47:18
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Pipken21 :
God bless you sending love and prayers 🥰🥰🥰❤️❤️❤️
2025-03-03 22:26:25
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Anthony OBoyle355 :
❤️From Ireland ☘️
2025-03-02 11:31:08
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Blonde Berzerker :
I have a vascular compression syndrome from a brain tumor. It caused a rare disease, erythromelalgia.
2025-02-28 23:54:57
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raysyourvibe :
Thank you for sharing your story luv
2025-03-01 02:49:54
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marypower177 :
heart chain 🙏🙏🙏♥️♥️♥️
2025-03-03 17:21:46
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XELA :
God bless you AMEN
2025-03-02 20:38:42
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buford :
Sending huge prayers! God is with you!💜🙏
2025-03-02 21:47:57
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Simona :
coraggio cara...io ho in forma leggera ma comunque importante la sindrome di raynaud e le persone non possono sapere quanto disagio ho...che Dio porti salute e consolazione nella tua vita...
2025-03-01 22:09:12
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maryjane64 :
Gods is always with you may god bless you honey 💖💖💖💖
2025-03-02 16:17:26
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ANA :
Lord Jesus Christ Son of God,with Your great Power and Your infinite Goodness,Please give health to this young woman!Amen!🙏🙏🙏
2025-03-02 03:05:01
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milopatera :
ahoj hodně štěstí zdraví🥰
2025-03-01 18:31:34
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Luna :
God bless you🍀🍀🍀❤️❤️❤️🙏🙏🙏🙏🙏🙏
2025-03-02 19:38:18
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XanderX74 :
Alles Liebe und Gute!
2025-03-01 18:27:55
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Laurie :
Prayers for you to heal beautiful girl!💖🙏💖
2025-02-28 18:56:25
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user4717137594428 :
bonne guérison amen
2025-03-02 12:42:10
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Macarena Fernadez :
😭pobre muchacha se fuerte
2025-03-03 00:40:25
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Stella Payne :
I had this experience too with MALS. We are survivors!
2025-02-28 18:52:34
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Rachelcaroline🎀 :
My biggest fear doing those surgeries🥺💗 feeling what you are feeling and sending you mental hugs💗💗
2025-03-29 15:18:14
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Andrea Mae :
Can I ask who diagnosed both for you? I have been fighting chronic illnesses half my life and suspect this and MALS.
2025-03-06 18:30:40
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NikkolHarper374 :
God bless you Lily! I am waiting to be evaluated for SMAS and nutcracker. I am feeling so tired and this was a blessing to read! Healing and strength to you 🫶🏽🙏🏽
2025-03-04 00:35:53
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