@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
Lily Mae
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Region: US
Friday 28 February 2025 17:33:48 GMT
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myfr0gbenji_
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
8
beachacha83
bea :
GOD BLESS YOU AND YOUR FAMILY
2025-02-28 23:06:08
38
themadio
themadio :
I’m getting this surgery in a few weeks ❤️hugs friend
2025-03-02 10:24:19
1
red.feather.fay
Heather :
The relief and realizing it was actually okay 🥺 So happy for you❤❤❤
2025-02-28 19:58:21
2
astar.sea
nagrom🇵🇸 :
proud of you
2025-03-04 03:47:18
0
pipken21
Pipken21 :
God bless you sending love and prayers 🥰🥰🥰❤️❤️❤️
2025-03-03 22:26:25
0
anthonyoboyle14
Anthony OBoyle355 :
❤️From Ireland ☘️
2025-03-02 11:31:08
0
blondeberserker1
Blonde Berzerker :
I have a vascular compression syndrome from a brain tumor. It caused a rare disease, erythromelalgia.
2025-02-28 23:54:57
14
raysyourvibe
raysyourvibe :
Thank you for sharing your story luv
2025-03-01 02:49:54
0
marypower177
marypower177 :
heart chain 🙏🙏🙏♥️♥️♥️
2025-03-03 17:21:46
2
xela4476
XELA :
God bless you AMEN
2025-03-02 20:38:42
5
bufordoliver65
buford :
Sending huge prayers! God is with you!💜🙏
2025-03-02 21:47:57
0
pmpmrvn
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
1
maryjane64084
maryjane64 :
Gods is always with you may god bless you honey 💖💖💖💖
2025-03-02 16:17:26
2
777floare777
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
8
milopatera
milopatera :
ahoj hodně štěstí zdraví🥰
2025-03-01 18:31:34
3
leelaehl9sn
Luna :
God bless you🍀🍀🍀❤️❤️❤️🙏🙏🙏🙏🙏🙏
2025-03-02 19:38:18
5
xanderx1974
XanderX74 :
Alles Liebe und Gute!
2025-03-01 18:27:55
6
fulloffaith7777
Laurie :
Prayers for you to heal beautiful girl!💖🙏💖
2025-02-28 18:56:25
3
user4717137594428
user4717137594428 :
bonne guérison amen
2025-03-02 12:42:10
2
macarena.fernadez3
Macarena Fernadez :
😭pobre muchacha se fuerte
2025-03-03 00:40:25
3
stella.payne
Stella Payne :
I had this experience too with MALS. We are survivors!
2025-02-28 18:52:34
1
rachelcarolinehei
Rachelcaroline🎀 :
My biggest fear doing those surgeries🥺💗 feeling what you are feeling and sending you mental hugs💗💗
2025-03-29 15:18:14
0
andreamae755
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
0
nharper374
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
1
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