Katrina's story
Katrina's aunt, a refugee in Austria, contacted me, asking for help. I offered to translate and share Katrina's story, in her own words. She need advice where she can go to access medical treatment.
Today is the first day of school in the east of Austria and I had fully intended to write about ALL of that, but this evening I received a message from Katrina’s aunt, Svitlana, who is in Lower Austria. Svitlana wrote me asking where Katrina can go for medical treatment. I explained I don’t know the answer to that, but I am happy to translate and share Katrina’s story in her own words, in the hope that it might help her to find people in Europe who can advise about potential treatment options.
“Medical history and how it all started.
I have not been walking for 11 years. It all started in 2010. At first it was just hard to walk and my knees hurt. Then there was a constant painful tingling in my lower limbs. I stopped moving my toes and couldn't jump up and down. I also lost a lot of weight and looked exhausted, I very quickly grew thin. There were many examinations and unclear diagnoses. And the disease progressed. It was harder to walk and I often fell. In addition, I wanted to yawn all the time, even when I had a good night's sleep. Everything was very strange and incomprehensible.
In 2012, we went to a children's hospital in Kyiv. They treated me with immunoglobulin and prednisolone. The hormone therapy was transferred home, but I was already taking the prescribed dose at home. At first, it seemed to be getting better, but then it became very bad. I started having severe headaches and dizziness. They called an ambulance and put me on a stretcher, on my back, and it was at that moment that something happened that the doctors have not yet figured out. I had a strange seizure. My body was twisting, my eyes were rolling, and something terrible was happening to me. The cause of the seizure was not found. It looked like a spinal stroke, in my opinion.
I came to almost immediately in the ambulance and understood everything that was happening. The MRI of my brain was clean and no epilepsy activity was detected. They looked only at my head. Unfortunately, they had to do more examinations to find the cause of the seizure and make an accurate diagnosis. They did not do an MRI of the muscles, a muscle biopsy, or a puncture. I was just a child at the time and my family was in a state of shock, none of us had any understanding of medicine at the time. Unfortunately, the doctors did not provide me with the necessary diagnosis and effective treatment. We lost a lot of time on incomprehensible treatment. And then there was no financial opportunity to go anywhere else.
It was from that day of the seizure, already in the intensive care unit, that I could not stand on my feet, my arms were crooked and I had a speech impediment, but it quickly stabilized. I still speak a little bit huskily, not quite the way I did before the illness. I couldn't lie on my back for a long time because my head hurt unbearably at that moment. Unfortunately, I don't remember much about the time immediately after the attack, what happened and how it went. It was a big shock and a blow to my family.
Since 2018, I have been taking monthly immunoglobulin Bioven 10% 50 ml. It helped only at the beginning, but now there is no improvement. It keeps my condition afloat so that it doesn't get much worse. It stabilizes me. In addition, due to my sedentary lifestyle, I have bone problems and a serious curvature of the spine. Now my diagnosis is chronic inflammatory demyelinating polyneuropathy (not specified).
During the war, due to stress, my arms became weaker. Local doctors don't care about my condition, so I do as much exercise as I can on my own, study medicine and my condition, look for answers and take tests. I take care of my health as best I can. But I need an adequate diagnosis because I still believe in my chance to get up.
I will not stop looking for the truth and treatment as long as I am alive, I will fight for my quality of life. The cause of my disability is an unknown disease. I need to find out what it is, and it is also desirable to find out the causes and start immediate treatment. I need a highly qualified neurologist, immunologist and infectious disease specialist. I need an adequate MRI, all the necessary tests and genetic analyzes. I am ready to do anything for this, because living in this condition is becoming more and more difficult and taking care of me is becoming more difficult. This is the kind of disability that requires constant help, because physically I cannot do the most basic things. But my spirit is strong, I have been fighting for so many years... Yes, I am very tired and exhausted, like never before.
Even under the sound of enemy artillery overhead, under the pressure of the nuclear threat next to me, under the pressure of a lot of tests and pitch blackness, I carry the light of hope. This is a very difficult and painful struggle. But I have to go on and look for answers, because for me there is no other choice. The truth is somewhere nearby.
I was a healthy child who enjoyed life a lot, laughed and smiled a lot. I was so strong and energetic, so interested in everything and wanted to see the world and live a quality life. I'm doing my best to become that girl, with a lot of energy and physical activity, who finally managed to build the life she's been dreaming of since childhood.”
Katrina is 25 years old. She lives in the town of Marhanets', in Dnipropetrovsk oblast, which is 4 kilometres from Enerhodar (nuclear power plant), and faces the direction from which the Russians fire artillery. The town has been under fire almost 24/7 for the past year.
Katrina’s father is a coal miner, her mother worked as a teacher of German and English in a school before Katrina fell ill. The family once travelled to Turkey in search of medical treatments, but doctors there were unfortunately unsuccessful in improving Katrina’s condition. Now, her mother also needs help, she has a brain cavernoma and is experiencing seizures.
I explained to Svitlana that if Katrina and her family were to come to Austria, they would receive health insurance as Ukrainians claiming EU temporary protection, but without a specific plan of which doctors to seek out, money to cover transportation costs, some funds of their own, a place to stay, it would all be really challenging.
Therefore, I offered to share Katrina’s story as it is, as she wrote in her own words in Ukrainian (translation courtesy of Deepl), in the hope that she will be able to share this link and ask for help. I also gave them the contact of the person in charge of medical evacuations to Austria from Ukraine, but they have a specific mandate to help those directly injured as a result of the war. Katrina’s story unfortunately does not meet those requirements.