Life for Alicia

£2,115 of £4,000 goal

Raised by 60 people in 8 months
Created April 12, 2018
Alicia is on the edge and needs your help now. She suffers from rare diseases. We need further medical tests in the UK. Please, help us to Save Alicia`s Life. She always helped others, now she urgently needs your support. After almost a year of misery, constant pain, being taken by an emergency ambulance to hospitals,  spending all our savings we think we have finally found it.  We must investigate Alice as soon as possible to save her life.

Thank you for your enormous support. Thank you for being with us in these difficult times. Thank you for believing with us for a better tomorrow.

I would like to apologize at the beginning for a long silence, but the fact that I do not write does not mean that nothing is happening. It is too early to share everything, but we can certainly say that Alice requires additional specialist tests.

Alicia, in addition to the planned research, also has a designated appointment at a specialist clinic in London. This is a place that deals with only one rare disease.

Until there are all the tests and full diagnosis and full treatment of the inflammation, the operation is postponed and we intend to stop the collection. We are glad that we found a specialist who undertook to coordinate Alicia's treatment and diagnostic.

We will also fight the legal way to recover the medical documentation of Monika - Alicia`s sister. Geneticists emphasize that this may be important in planning the tests for Alicia and her family.

Based on previous appointments with experts and some medical tests results there is almost certainty that Alicia has multiple health conditions. 

We need further tests for these rare diseases to 100%to confirm what her conditions are. We believe they may be

- The Ehlers-Danlos syndrome (EDS) and other connective tissue disorder (has been already confirmed)

Dysautonomia or autonomic dysfunction, a condition in which the autonomic nervous system does not work properly  (POTS has been already confirmed)

Mast cell activation syndrome (MCAS) (Many tests were done and we need to do some additional ones)

This is crucial to have as many medical test results as we can to plan Alicia`s further treatment. 

In 2018, we had seven private consultations including rheumatological, neurovascular, neurologist.

- Research on autonomic dysfunction
- Ehlers-Danlos Syndrome consultation and examination
- ENT examination with consultation
- Allergological and immunological tests, including the first part of research into the cities of Cell Activation Syndrome
- Upright MRI
- Spine surgery

We are now waiting for the next very important specialist studies, consultations and opinions of specialists.

Anyone who has a health problem needs doctors. Without their help, there is no chance of getting the right research, getting a diagnosis and treatment.

We do not have the strength to focus on those who fail. We are grateful to those who are ready to listen and seek answers. This is not a straight road. With time, you get used to certain symptoms and you endure more and more. Alice is doing a bit better now than before. Although she still has days that he spends all day in bed.

Some ailments have disappeared, but new ones also appeared. He is not the same energetic person. There is no strength to travel, work or any social activity. There are, however, hopes that it will be good. You are wonderful that you are on this path with us.

We would like to thank our friends and many people whom we personally did not know for the support. We send you our love.

Three sisters (from left Alicia, Maria and Monika)

Before and Now

Kate, the best friend of Alicia, who from the very beginning has wonderfully supported her in this fight, she 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.

Please, do share our appeal with your friends #LifeforAlicia. Thank you so much for your donations, support and help.
+ Read More
Professor Christopher Mathias and Alicia`s POTS diagnosis. Thank you so much for all your donations. Thanks to your generosity we could have this appointment. Alicia`s story #5 blog post - http://lifeforalicia.org/professor-mathias-and-pots-diagnosis-alicias-story-5/ #lifeforAlicia
+ Read More
Hi everyone, just wanted to thank everyone from the bottom of my heart for all your kind donations. You can read Alicia`s story on her blog - http://lifeforalicia.org/shocking-diagnosis-from-barcelona-alicias-story-4
+ Read More
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£2,115 of £4,000 goal

Raised by 60 people in 8 months
Created April 12, 2018
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