A young woman starving to death because of a rare disorder had to travel 4,000 miles to save her life.
Kristina Bayus-Roszak, 29, lost 30lbs (more than 13kg) in just six weeks when she suddenly fell ill.
She suffered debilitating symptoms including constant vomiting, abdominal pain and nausea until doctors finally diagnosed her with median arcuate ligament syndrome (MALS), also known as Dunbar syndrome.
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“The doctor told me I would have maybe 18 to 22 months to live if I didn’t have surgery,” Kristina, a digital marketing specialist, told Need To Know.
“Mine was one of the worst cases they’d ever seen.
“My body was shutting down.
“I was slowly starving to death.”
The rare syndrome is caused by the artery supplying blood to the abdomen becoming compressed.
Weak and desperate, Kristina, from Cleveland, US, recently made a life-saving trip to Leipzig in Germany.
She claims she could not have the surgery in America because there are no surgeons who can operate on multiple compressions at one time.
Once abroad, she was given an advanced ultrasound scan and diagnosed with five more extremely rare disorders , which are all characterised by abdominal vascular compressions.
Kristina’s kidney had turned black from the lack of bloodflow and within a week she was sent to Dusseldorf for specialist surgery.
She said: “My family were very supportive.
“My husband Kyle made the journey with me and I could not have done it without him.
“My friends and family also did multiple fundraisers and a GoFundMe to help me get there. I wouldn’t be where I am today without their love and support.”
The life-saving operation lasted over eight hours, during which Kristina’s surgeon discovered she also had an abdominal aneurysm that would have ruptured within a month had it not been found.
It has been almost two years since the surgery, which is the estimated recovery time for a procedure of this kind.
Thankfully, Kristina is only now coming to the end of her ordeal.
She said: “My surgeon is nothing short of extraordinary.
“I am doing so much better and I have the ability to eat once more, which I’ll never take for granted again.
“I have also slowly gained weight and my organ health has improved substantially.
“I’m also no longer in chronic pain and can get back to doing the things I love, like hiking.
“I have my life back.”
Kristina has shared her experience in the hope it might help others going through something similar.
She said: “I am so proud of my ability to persevere through this.
“There was nothing easy about travelling to a foreign country for a major surgery.
“I wasn’t even sure if I’d survive.
“I did survive though and while it was the hardest thing I’ve ever dealt with I made it through and I am a stronger and a better person for it.
“I wish people knew how incredibly strong those with vascular compressions and rare diseases are.
“Research and treatment options are limited and half of the medical professionals don’t even understand.
“My goal now is to bring awareness and help to so many others suffering from these debilitating and even deadly rare diseases.”
“We fight every day for care even when we are dealing with the cruellest pain and symptoms.
“If you have someone in your life struggling with a chronic illness, rare or not, please give them some grace.
“Remind them they are loved and they are worthy.
“Understanding and kindness go such a long way.”
