The story of Gabriela
My story as a patient in Romania
Multiple autoimmune diseases (Dermatopolymyositis, Scleroderma, Sjogren’s Syndrome, Rayanar Syndrome, Mixed Connective Tissue Disease, Overlap Syndrome
My name is Gabriela and I am 52 years old with multiple autoimmune diseases for 10 years
I am married, I have two beautiful children, a wonderful husband – who loves me very much and who for me would be able to bring me the moon from heaven – to see me happy and healthy – in a word a beautiful and happy family .
In 2011, I was a normal person – working shifts – not having a very hard job – working on a computer – I was 42 years old – so I can’t say I was an old person – and all of a sudden my life was gone. as it were.
I started to feel worse every day – which means I feel worse and worse – from one day to the next – that is – I got tired very quickly, I was no longer the man who woke up in the morning with work ethic – I was no longer the person who worked from morning till night and did not feel tired.
As an irony of fate – the tests came out very good – and yet in those days of medical and rest – although I slept most of the day – when I woke up I was more tired than when I went to sleep.
With each passing day – I felt much worse – I already had a muscle fever – from what I don’t know – I was just sitting idle – I didn’t go to work anymore because I was in the doctor – I had started not being able to dress on my own – I had already reached the phase in which I asked my husband to finish my bra – if I hit a broom in the house I had the impression that I had made a great effort – so I went back to the family doctor asking him to send me to the hospital because I did not I feel good – I didn’t have a fever – I didn’t cough, I didn’t run a runny nose – so there was no question that I had a cold or the flu – and yet from day to day everything I did became harder and harder – I couldn’t do it anymore to wash my head on my own – when I raised my hands up I had the impression that they were breaking my wrist – that something was breaking in me – I could no longer climb the stairs
So I went back to the hospital doctor – who told me there was no pain and referred me to the endocrinologist, with whom I started a treatment with eutirox 25 mg – -calcium, vitamins, -but unsuccessfully -and vocal rest as moreover, for me, it was very difficult because I work in the call center and that affects my work every day – but I was lucky that I had an ok boss, who understood me, and to whom I would promise as a day I will solve this problem under treatment
It took 3 years of treatment – and I couldn’t solve anything – I had already started contacting the surgeon – who told me that if I didn’t hurry to have this operation, time would run against me – because I had a polynodular goiter. all the beauty and if I don’t have surgery there is a risk of dying while still asleep, because those nodules had grown a lot and there is a major risk of them breaking
It is difficult to make such a decision, because I believe that everyone is afraid of surgery, of the necessary risks, and not to mention the possibility of losing their job – which I later lost – but I would choose between my life and work.
So in September 2015 – I had surgery successfully – much to my delight – the operation went well, and because I lost so much time until I found out what my health problem was, with the investigations, the treatment and the fear – at the exam My biopsy showed a grade 1 tumor.
And if it had all ended here – how beautiful it would have been – it would have been a story with a happy ending but it wasn’t like that.
From year to year I would discover that these rare ailments – these autoimmune diseases, would settle very comfortably, and every year I would make friends – so to speak with yet another sister of these ailments – so -with with the help of patient associations – I arrived at Colentina Hospital in the first phase – where I was to find out that the autoimmune disease – was amplified and from an autoimmune disease I had two others – I had a start of SJOGREN SYNDROME – RAINER SYNDROME – and a MIXED TISSUE DISEASE CONJUNCTIVE – more precisely – SYSTEMIC SCRELOSIS, and all this combined with SEVERE OSTEOPOROSIS last degree – more accurate at any time can remain paralyzed – because there is a risk that the bones will break.
You will realize that I thought the sky was falling on me – and if I was diagnosed with cancer as I received it – the risk of being paralyzed for life was the end for my psyche.
I would find out that I am not the only one in this situation, and that there are many people like me – so I decided to start fighting with other people like me, and with the association – with the hope that one day we can we also benefit from treatment for these diseases – which end up destroying you inside.
And a month ago – that only the year had passed and another change had to take place in my life – so to speak – I would go to the next level – the systemic sclerosis that I had advanced and I would find out that I have a SCLERDOERMIA of all the beauty – which slowly – took care to affect my lungs, esophagus, and I didn’t even feel it – only when the condition was already accentuated did I feel the first signs. I woke up one morning to be shedding blood, to have a relentless gastric reflux, to have a sore liver, in the conditions in which I usually care about what I eat and what I do.
It is very sad and very difficult to go through such periods – it is very difficult that there are no treatments for these conditions – it is very difficult that people do not understand you – do not believe you – that everyone thinks that you are just a person all day whine.
Due to all these problems, I lost my job, I lost my teeth, I can no longer eat as I once did because I have a severe dysphagia, I am more sensitive, I can no longer be the person I once was, an active person, who went on trips and travel and climb mountains, the sun bothers me, so I can no longer stay at the beach or go to sea as I once did, I am medically retired and I have a degree of handicap, in a word my life has turned upside down – and although I’m only 53 years old, I feel like I’m 153 years old, and that bothers me terribly.
I am lucky with the Association of Patients with Autoimmune Diseases in my country – Romania – that it is with us and helps us, supports us and lifts our spirits whenever we fall or we do not find ourselves.
That’s why I want to fight, to participate in studies if possible, as long as I’m alive so that one day a treatment will be discovered for people with autoimmune diseases, so that no one goes through what we go through.
All the best
Gabriela – Romania