[versione italiana]
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My name is Vera. I'm 25 years old and I'm suffering from a rare disease, the ARVC: Right Ventricular Dysplasia Cardiomyopathy.
This is a genetic disease that causes cardiac arrhythmia and is usually characterized by alterations of the right ventricle.
It is not always easy to diagnose and, unfortunately, is little known and undervalued. Its clinical signs usually start during adolescence and early youth (15-25 years of age).
What is it?
The heart is normally made of cells that are arranged in an orderly manner and joined together by intercellular junctions. In patients suffering from arrhythmogenic right ventricular cardiomyopathy, a genetic mutation causes the production of defective cardiac proteins that eventually cause damage and destruction of cardiac cells.
A reparative process follows, in which cardiac cells are replaced by fibrous and fat tissues. The damage to heart cells can both lead to a dilation of the right ventricle and to promote the onset of arrhythmias.
The main symptoms of this disease are: palpitations (or irregular heartbeat), syncope (sudden loss of consciousness and fall to the ground), congestive heart failure.
When the arrhythmia is particularly severe can lead to sudden death.
At the moment there is no therapy working on the cause of the disease: there are only several antiarrhythmic drugs that are commonly used to control arrhythmias and, in cases where they are ineffective or particularly dangerous arrhythmias are present, the implantation of a defibrillator is indicated.
I began to experience the first symptoms at the age of 12-13 years, when I used to practice competitive swimming and exercised 2-3 hours every day. The first symptoms were palpitations, tachycardia getting stronger and stronger, loss of strength and a few faintings.
In spite of the failure to understand what was happening to me, I was forced to abandon suddenly my swimming activity and my team.I was feeling a deterioration in my physical condition from month to month and within a couple of years I went from being an athlete to feeling sick and struggling after climbing just a few steps of a stair.
My odyssey among hospitals lasted around 10 years. No doctor could figure out the cause of my very violent tachycardia, often everything was reduced to a supposed invention to receive the attention that any teenager wants... Until one day, on a summer afternoon, at the age of 18, I collapsed in a park with a sudden cardiac arrest.
I consider myself lucky, I would say miraculously so, because some passersby were able to revive me with cardiac massage...But in these years I knew lots of families whose children, apparently healthy and strong, died suddenly during a soccer match or simply at home, in the arms of parents unaware of the disease.
On that occasion I had a defibrillator implanted, but only at the age of 21 years I was diagnosed with ARVD, the University Hospital of Padua, by the cardiologists who had founded the GECA Association a decade earlier.
GECA ONLUS is a non-profit organization founded to support and help people affected by heredo-familial heart diseases and their families.
Founded in 2000, GECA ONLUS now counts 700 members, with 420 families who are active in carrying out programs to support research on these diseases.
In recent years research, especially in Padua, has made great progresses in identifying genes whose mutations cause arrhythmogenic right ventricular cardiomyopathy.
Currently 8 genes have been found responsible for this disease, 4 of which were discovered at the University of Padua.
GECA works to support and promote a proper prevention since the disease is progressive and may manifest sudden death as the first "symptom".
In addition, it created an information center that provides medical and scientific information about heart diseases and arrhythmic behavioral indications, genetic counseling, informational meetings for physicians and the establishment of scholarships to promote medical and genetic research.
Etsy Team Italy, together with all its members, has decided to start a
campaign in favor of GECA ONLUS.
From July 9 to September 9, you can buy beautiful hearts made by our team members at our charity shop: at the end of the campaign, all proceeds will be donated to the association that takes care of people suffering from this disease and supports the genetic research to fight it.
GECA ONLUS' site (italian only):
http://gecaonlus.altervista.org/
Vera,
from
VeraCreations and
Verapostblue
English translation by ElenasLoom
