When everybody writes that my wife is fighting for her life, only me and a few closest people know that Alicia is also fighting for the diagnosis of additional rare diseases.
This is the most difficult year in our life. It started in May 2017. Alicja felt very badly. The ambulance took her from our home to the hospital, the doctors connected her to the monitor, the apparatus rattled like crazy, and they stood and watched because they did not know what was going on. Her hands and legs numbed, they ruled out myocardial infarction, stroke and sepsis. Nobody had any idea. We spent a full night at the A&E in a hospital. At 5 am, we were discharged from a hospital and sent home, without a diagnosis.
And then it was getting worse week by week. Alicia had less and less strength. She was falling asleep in the daytime. Headaches, hand tremors, sensations, convulsions, loss of balance, nausea, oedema, haemorrhage, spontaneous bruising, shortness of breath, memory problems, tachycardia. Lots of research, drugs, hypotheses, but the test results for subsequent diseases were negative. The ambulance took Alicja to the hospital many times.
Then the doctors stopped looking and found that it was fatigue, overwork and stress. Without medical education, I felt it was not true. Some of the symptoms did not quite fit this theory. The documentation did not include all the symptoms we gave. During this time, Alicia visited about 60 specialists, including professors. She received more drugs, more tests, but when their theses did not confirm, they suggested rest. We even considered returning to Poland, because it is easier to have family and friends close by.
I started to seek help from specialists from abroad. I sent Alicia’s medical records, a list of her symptoms, photos. Some of them were ready to examine Alice right away. The Neurology Department of the well-known hospital in Berlin wanted to do for us free autoimmune research from the brain fluid. It’s very expensive and very specialized tests. We just had to send the material for testing, but nobody wanted to puncture. We thought to go there, but then Alicja lost consciousness again. And again the hospital and subsequent medical tests, consultations, new medicines, new suspicions. In this long way to diagnosis, I heard only once from the doctor that Alice is seriously ill, but he can not help her. He gave me a private contact and asked me to inform my wife about my wife’s condition. He was overwhelmed and powerless like me.
The history of other patients and the list of symptoms led us to a proper diagnosis. I contacted specialists in rare diseases in Spain. After getting acquainted with the submitted documentation, they agreed to see us. In addition, we have sent a description of Alice’s history, symptoms and a CD with MRI imaging of the brain and neck. We decided to fly to Barcelona in an hour. In March we flew to Spain. Before we left, we were able to buy a wheelchair that turned out to be necessary during the trip.
Thank you for your donations. You can help us here – www.gofundme.com/liferoralicia.
Alicia is on the edge and needs your help now. She suffers from rare diseases and is going to have life-saving surgery. We also need to raise funds for additional costs related to a neurological surgery in Spain and further medical tests for EDS, POTS and MCAS. Please, help us to Save Alicia`s Life.