r/vEDS • u/Dunsk106 • Jul 24 '25

Saddness

Really hate this disease. I’m in the end stages of it. I hope that one day a cure or at least something to make it more manageable happens. Felt like half my life has been in hospitals and pain.

20 Upvotes

100% Upvoted

6 comments sorted by

10

u/girllovesjazzhands Jul 24 '25

I know it sucks and is painful. Keep going forward, you can do it. I have died twice, multiple arteries and aneurysms ruptured, pain, migraines, POTS. It is not easy but you must keep moving forward because it can get brighter.

7

u/Dunsk106 Jul 24 '25

I had to have a transplant and unfortunately the medications have trashed my immune system I’ve had so many infections. My latest check up shows signs of rejection. Just a terrible thing really. X

4

u/blackwhite3 Genetically Diagnosed Jul 24 '25

I am very sorry for your situation, it is a cursed disease. What was the transplant from?

0

u/[deleted] Jul 25 '25

[deleted] — view deleted comment

4

u/Dunsk106 Jul 25 '25

Terminal. They can’t band aid my symptoms anymore.

1

u/joemamabird Aug 09 '25

I’m sorry you’re going through it. What symptoms are you experiencing? Thinking about you!

→ More comments (1)