A 29-year-old Ohio woman with a rare medical condition that left her in so much pain she couldn’t eat had to travel 4,000 miles to receive life-saving surgery in Germany.
Marketing specialist Kristina Bayus-Roszak first noticed something was wrong with her health after losing 30 pounds in just six weeks because she was in excruciating pain that made it nearly impossible to eat.
She suffered from constant nausea and vomiting and severe abdominal pain.
Doctors were eventually able to diagnose him with Dunbar syndrome, a rare disease that affects only two in every 100,000 people in the United States.
The disease, also known as median arcuate ligament syndrome, is a condition in which the arch-shaped band of tissue in the chest area (the median arcuate ligament) presses on the celiac artery, which sends blood to the upper abdomen.
In Ms. Bayus-Roszak’s case, her artery was compressed in multiple places, leading to more severe symptoms and pain.
Following his diagnosis, he was given less than two years to live if he did not undergo surgery to repair his celiac artery, a surgery he said no American doctor would perform.
Kristina Bayus-Roszak, 29, was given less than two years to live if she did not undergo surgery to repair compression of the artery that supplies blood to her abdomen.
After losing 30 pounds in six weeks, he was diagnosed with Dunbar syndrome. She traveled from her home in Ohio to Germany for surgery.
Ms Bayus-Roszak said: “Mine was one of the worst cases they had ever seen. My body was collapsing. I was slowly starving to death.”
Desperate and out of options, she flew to Leipzig, Germany, to be examined by a highly specialized doctor.
Once there, he underwent an advanced ultrasound and was diagnosed with five more extremely rare disorders, all characterized by similar abdominal vascular compressions.
She was then sent to Dusseldorf for an eight-hour surgery, during which the band of tissue compressing the artery was cut, relieving the pressure and restoring blood flow to the abdomen.
Her surgeon also found an abdominal aneurysm (an enlargement of the abdominal portion of the aorta, the largest artery in the body) that would have ruptured within a month if it had not been found.
She said: ‘My husband Kyle made the trip with me and I couldn’t have done it without him.
He said the surgery performed in Dusseldorf saved his life and greatly improved his health.
‘My friends and family also raised several funds and created a GoFundMe to help me achieve this. “I wouldn’t be where I am today without their love and support.”
Two years after the procedure, Ms. Bayus-Roszak’s life has greatly improved.
She said: “My surgeon is extraordinary. I am much better and can eat again, something I will never take for granted again.”
She has also gradually regained her weight and the health of her organs has improved substantially.
“I no longer have chronic pain and I can go back to doing the things I like, like hiking. I have my life back,” he added.
Surgery, such as that performed on Bayus-Roszak, is the only treatment for Dunbar syndrome.
Ms Bayus-Roszak added: “I’m very proud of my ability to persevere through this. It was not easy at all to travel to a foreign country for major surgery. I wasn’t even sure if I would survive.
‘However, I survived and although it was the hardest thing I have ever faced in my life, I got through it and I am a stronger and better person for it.
‘I wish people knew how incredibly strong people with vascular compressions and rare diseases are. Research and treatment options are limited and half of medical professionals don’t even understand it.
‘My goal now is to raise awareness and help as many other people suffering from these debilitating and even life-threatening rare diseases.’
Now he can eat normally and enjoy life as he did before he got sick.
She hopes her experience with a very rare disease that affects about two in every 100,000 people will inspire others to share their own stories and struggles, as well as drive research.
Rare diseases are notoriously difficult to treat due to the limited therapeutic options available.
Because some diseases are so rare and affect a relatively small proportion of the population, pharmaceutical companies have little financial incentive to develop new treatments or cures, given that few people will actually buy them.
According The Lancet Global HealthAbout 95 percent of rare diseases lack approved treatments.
Most rare diseases (80 percent) are genetic and almost 70 percent appear in childhood.
There have been major advances in rare disease research, including genetic testing to diagnose rare neurological disorders and the passage of the Orphan Drug Act of 1983, which provides tax incentives for rare disease research and the development of cures.
But the report’s authors said: “However, even when we have treatments, there is no promise of accessibility for everyone.”
‘For example, Hemgenix, a gene therapy to treat hemophilia B… costs up to $3.5 million per case in the United States.’
They added: “Insufficient awareness of their rare disease among healthcare staff and communities may result in patients’ symptoms being invalidated, visible symptoms of the disease may result in social discrimination, and schools and employers may not addressing accessibility needs.”
Ms. Bayus-Roszak said: “We fight every day to get medical care, even when faced with the most cruel pain and symptoms. If you know someone in your life who is battling a chronic disease, rare or not, please extend some patience.”
“Remind them that they are loved and worthy. Understanding and kindness go a long way.”
