In Memory of Brigitte


Senior Member
An austrian patient with ME, vEDS and CCI died this week after receiving fusion surgery in Spain. Brigittes chance to survive this surgery was very low due to her diagnosis of vascular EDS. But she had the courage to try it. May she rest in peace.

Money is still . . . [being] raised to now help her husband bring her back home.
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wiggle jiggle
seems, she was 6 months ill.
one month bed-bound.

quotes from the gofundme page:

I'm now in Innsbruck Hospital. They found out that my Arteria Vertebralis, one of the Arteries that go to the brain, is closed. But they do not believe in Instability. So, there is also no help...I'm broken inside and suicidal.
Today i talked to the OOE GKK/Insurance. They won't pay for the surgery. I need a medical Expertise which comes to a conclusion, that a surgery is needed. But there is no doctors aware of Eds and comorbidities like instability, so it's not possible to get this. No help and no money. Thank you Austria.
So i will not get help in Austria, so i have to travel to Barcelona to save my life. What a hard decision for me. It breaks my heart, knowing to be fused from head to the thoracic spine - which means motion is limited to 100%. And I have to endure the surgery and my body and soul is weak. Lost 12 kg, because I'm not able to eat properly. Please help me raise money for this.
It infuriates me how people this sick won't be treated by the medical system, and how her husband, left with two kids, still has to pay for the surgery and the cost of bringing her wife back home. It is horrid beyond words.

The only painful reality for me regarding that some patients with ME are recovering is not their recovery itself but the fact that the whole thing of the upright MRI plus the surgery (which is already risky) are utterly expensive and most people don't have access to it. As with many treatments. This needs to stop. :mad::mad: