'I lost 13kg in six weeks as rare condition left me starving to death'
A young woman wasting away due to a rare condition was forced to travel 4,000 miles to save her life. Kristina Bayus-Roszak, 29, shed 30lbs (more than 13kg) in just six weeks when she suddenly became unwell.
She endured crippling symptoms including relentless vomiting, stomach pain and nausea until medics finally identified her condition as median arcuate ligament syndrome (MALS), also known as Dunbar syndrome. This incredibly rare illness affects just two in every 100,000 people, according to estimates.
"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 What's The Jam. "Mine was one of the worst cases they'd ever seen. My body was shutting down. I was slowly starving to death."
Dunbar syndrome takes place when the artery delivering blood to the stomach becomes squeezed. Frail and desperate, Kristina, from Cleveland, US, recently embarked on a life-saving journey to Leipzig in Germany.
She maintains she couldn't undergo the operation in America because there are no surgeons who can operate on multiple compressions at one time. Once overseas, she received an advanced ultrasound scan and was diagnosed with five more extremely rare disorders, which are all characterised by abdominal vascular compressions.
Kristina's kidney had also blackened from the shortage of blood flow, and within a week, she was transferred to Düsseldorf 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 procedure took more than eight hours, with Kristina's surgeon uncovering that she also had an abdominal aneurysm that would have burst within a month if left undetected. It has now been almost two years since the surgery, which is the estimated recovery time for a procedure of this kind.
Thankfully, Kristina is finally nearing the end of her gruelling journey. She explained: "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 opened up about her ordeal, hoping it might assist others facing similar challenges. She continued: "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."
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