Kate, the best friend of Alicia, knows best how the disease has changed her life. What was Alicia like before that illness and what is she like now?
Before: Full of energy and passion, cheerful, always on the move, smiling and sociable. Signing loud and fooling around. She’d be able to make smile on each face and give joy to many people.
Now: Tired, weak, needing rest all the time. The smallest effort causes a radical worsening of many symptoms, then again we have to call an ambulance. That is why she almost all day stays in a bed. If she wants to go anywhere, she needs to use a wheelchair and rely on her husband`s help. Unfortunately, a provisional folding wheelchair is no longer helpful. It doesn’t guarantee enough stability.
Before: She would go everywhere and do thousands of things at once. She loved to travel and meet new people. Her blog Duolook.pl, which has risen from her love to travel, is the place where together with her husband, she was discovering the beauty of amazing places and sharing it with readers.
Now: Sometimes she has difficulties to speak. She can’t fully breath. Not to die during sleep, she needs to wear a special orthopaedic collar during the night. She uses it also during the whole day to make her life bearable.
Before: She used to read a lot of books, go to museums, galleries, take part in conferences. She taught seniors new technologies and memory techniques.
Now: She’s having temporary memory loss, problems with concentration. Forgets things she did a moment ago. Loses words. Sometimes, during a conversation, she falls asleep.
Before: She was a very active person as a journalist. She had made various interviews, reportages. After quitting media, she carried out many trainings and creativity workshops, wrote scripts. She travelled thousands of kilometres and trained more than 8 000 people.
Now: Each position change from vertical to horizontal creates a risk of another attack. She spends her time alone or with husband only. Her husband had to quit a job to take care of her. All visits are such struggle that she resigned from seeing anybody. Her world is now all about counting time from one doctor’s visit to another.
Before: She loved life. She loved people. She appreciated every little thing and any time she had the opportunity to help others, she never refused. She was gaining a lot of joy, happiness and strength from it.
Now: She loves life. She loves people. She observes birds throughout the window, enjoys green buds on the tries. Cries while reading about other sick people raising funds for surgeries as she is. After her surgery, she plans to run a blog, where she could share her experience with others and help them to reach proper specialists whiling to save their lives.
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.