Undiagnosed Diseases Network INTERNATIONAL, Newsletter Luglio 2018 N° 3 – Letter from a patient: Deborah Capanna
July 10, 2018
To have symptoms, to feel pain, to be awareness to be sick without getting a diagnosis, that is the drama of hundreds of thousands people in the world, invisible to Medicine, to Institutions and to Society.I am 44, and I live with an invisible illness since many years to now. I was just a little girl when the first symptoms occurred. I felt bad with during physical activities, even fainting in warm days. I was used to consider normal to stay sitting in front of the other children playing around.
Then I began a shy young girl, I was able to suffer silently in the personal conviction that I could disturb other people around me, offering my best smiles, following others’ lives, never saying “no”, for the sake to feel less “different” and not to be misunderstood.
At the age of 29, on an ordinary day, my life was completely turned upside down. From a trivial pain to a knee, the pain in the successive months, spread throughout the body abruptly resulting in disability, completely transforming the muscles into stone.
The suffering was continuous, day and night, I could not walk and do the most trivial things without experiencing an indescribable suffering. I kept weeping cause thinking I was going to die, without being able to do anything to prevent it. I was terribly frightened and felt lonely, because, despite the proximity of my own family, the pain felt living against an unknown evil with no cause or name, creates a sense of loneliness and fear that no one could have never be able to stop or alleviate.
My own desperation as well as that of my family, grew every single time we went to consult a doctor, because the response was always just the same: It’s probably stress. I had the need to leave my loved job and, as a consequence of wrong therapies, I had to decide to give up the possibility of becoming a mother.
In these years I have faced ignorance, selfishness and scarce humility of doctors when facing with unknown symptoms, unable to admit their limits, always ready to dump on me their frustration by labeling me as depressed, anxious or worse, packing easy and quick diagnosis and administrating therapies with the only result of letting me get worse and worse.
The various specialists never communicated each other, leaving to me the burden of reporting to their colleagues all that mess of suppositions, diagnoses, symptoms and the results of examinations.
At any further visit the things to tell were exponentially increased and the time available to me, instead, decreased.
They never tried to take me totally in charge, going on in a sort of irrational fragmentation me as a person, in many small pieces without being able, at the end, to see the whole problem. They abandoned me with no indication of what to do and where to go to try get better.
For many years, I have come and gone from hospitals for visits and exams in an attempt to give a name to my rare beast, which is continuing undisturbed to poison every part of my body, leaving me, as a kind of mocking, a healthy person’s appearance.
My every day fight is against prejudice, towards myself and those who live a life of forced appearance, against a Society that does not have the knowledge and does not recognize rare diseases and, even less, diseases orphan of a diagnosis, leaving sick people without medical care and economic assistance.
No one deserves to live a life made of pain, for the only cause of the poor or absent communication among doctors.
It is deeply wrong to let people die blaming only diseases or fate, when wrong diagnoses and the lack of responsibility of doctors have probably the main responsibility. Patients emerge totally devastate, both psychologically and economically, from such experiences, and eventually they get forced to face the so Called ‘ Journeys of Hope ‘.
I spent several years trying to raise awareness at an institutional level and sensitizing the media about the problem of the sick people orphans of diagnosis, literally crying out to the world the need for a dedicated centre. I started My long and tiring path of awareness in 2011 opening a simple Facebook group “I malati invisibili”, followed by an internet site and a forum where to collect as much testimonials as possible.
I realized that a big mess of people were in a situation very similar to mine. I read in them the despair that was mine too, realizing that the greatest difficulty was in receiving a certain diagnosis and to get it in a reasonable time.
Seeking a concrete way to help them, I became aware of the program adopted in the United States by the NIH (National Institute of Health) for patients without diagnosis. I tried to adapt their program to the Italian Health System and, with a bigger than ever amount of determination in trying to change the fate of sick people orphans of diagnosis, in 2014 I founded the “Comitato I Malati Invisibili”. It is still the only institution in Italy dealing with sick adults suffering from unnamed pathologies both genetic and of any different kind.
I Introduced and published on Socials the project of a dedicated clinical centre. For the first time in June 2014. I began to face plenty distrust and difficulties in understanding this priority, because at that time no one knew or ever mentioned the people without diagnosis or the rare illnesses ones.
Obviously, I didn’t surrender. I recruited a scientific committee involving in the project medical specialists in rare and complex diseases from my region and I started working at the realization of what at the beginning appeared only as a dream.
The Liguria region welcomed our proposal with great interest, and the hospital Policlinico San Martino of Genoa in September 2017 officially launched the clinical activity of the first clinical centre in Italy for patients orphaned of diagnosis, undersigning a convention with the Comitato I Malati Invisibili Onlus.
To achieve this goal I fought and suffered so much, but I can not stop because there are still many different goals to be achieved.
The next ones are definitely to let the clinical centre be a member of the international network of undiagnosed Diseases and open other centre in different Italian regions in order to be easy for patients to reach them.
Despite my grit unfortunately I have not yet managed to dominate my “invisible beast”, nay the more I fight the more it seems to rage against me. My clinical case was shared with Dr. Adams of the NIH, which I had the pleasure to personally know at an international conference that the Comitato I Malati Invisibili organized in Genoa in April 2017, thanks to which I could also meet the wonderful Helene Cederroth and her husband Mikk founders of Wilhelm Foundation.
Unfortunately against these diseases tenacity is not enough: we need messes of information, various therapies, efficient communication, time and skills in listening, the patients to be taken in charge and a strong thrust in research.
Unfortunately against these diseases tenacity is not enough: we need informations, therapies, efficient communication, time and skills in listening, and a strong thrust in research.
Through The Comitato I Malati Invisibili I want to Be part of the change aimed at improving the conditions of people without diagnosis, to be able to give them the best weapons to eventually win their personal battles and our common war.
We all have the right of living a dignified life.