My name is Giuseppina and I am 49 years old living in Castel D 'Azzano in the province of Verona (Italy).
I was diagnosed with Pompe's disease about 20 years ago, to tell the truth, at that time I had requested a series of tests for other health problems, from those findings it came out that, I lacked an enzyme in my muscles.
I immediately thought of my mother who had lived most of her life in a wheelchair and this made me realize that maybe the two could be connected.
I'm not very good at talking about myself anyway, in short, after about 8 months, they subjected me to muscle biopsy at the San Raffaele in Milan and after about a month, if I remember correctly, the diagnosis: Glycogenosis type 2.
The doctors who saw me after the diagnosis had told me that there was no cure that the disease was degenerative and that in any case it was necessary to hope for the research being carried out.
I spent a good period of time in moments of great discomfort and I must confess that I don't like to think about that period.
After some time my sister had let me know that in Pavia some doctors prescribed a high-protein diet, I don't remember everything in detail but I phoned Doctor Danesino and after a while I was admitted to the Mondino hospital in Pavia, I was referred to various examinations and assessments.
Dr. Ravaglia informed me that if I followed an appropriate diet and exercised my body would benefit.
After being discharged I had more hope and I was determined to follow these tips to the letter.
My experience leads me to say that: an appropriate diet combined with exercise, even if moderate, helps (I felt beneficial almost immediately).
My physical exercise consisted of fitting a pedal between the legs of a chair and pedaling for about an hour, it was quite painful and tiring and to help me in the effort an hour before pedaling I drank the Friliver (supplement).
Also this passage helped me because I felt less discomfort during the effort,
Then to make everything less noisy, I kept a chair on which I put the tools of my hobby and since I had my hands free I gave life to my creations.
I made more than a hundred little trees with beads and many little angels in corn paste, grinding km.
Then finally the replacement therapy.
This is what I can tell everyone: never give up, 20 years ago a doctor told me that after 5 years I would end up in a wheelchair and today my legs still support me.
Maybe I was luckier than others, I don't know this but I tried to react as I could. I also have my moments, no, but I accepted my pathology because it is part of me and I hope that the research can give me and those who still need so many good prospects
You can look at my artworks at this link: https://www.facebook.com/ilcantucciocrearepersognare/
I was diagnosed with Pompe's disease about 20 years ago, to tell the truth, at that time I had requested a series of tests for other health problems, from those findings it came out that, I lacked an enzyme in my muscles.
I immediately thought of my mother who had lived most of her life in a wheelchair and this made me realize that maybe the two could be connected.
I'm not very good at talking about myself anyway, in short, after about 8 months, they subjected me to muscle biopsy at the San Raffaele in Milan and after about a month, if I remember correctly, the diagnosis: Glycogenosis type 2.
The doctors who saw me after the diagnosis had told me that there was no cure that the disease was degenerative and that in any case it was necessary to hope for the research being carried out.
I spent a good period of time in moments of great discomfort and I must confess that I don't like to think about that period.
After some time my sister had let me know that in Pavia some doctors prescribed a high-protein diet, I don't remember everything in detail but I phoned Doctor Danesino and after a while I was admitted to the Mondino hospital in Pavia, I was referred to various examinations and assessments.
Dr. Ravaglia informed me that if I followed an appropriate diet and exercised my body would benefit.
After being discharged I had more hope and I was determined to follow these tips to the letter.
My experience leads me to say that: an appropriate diet combined with exercise, even if moderate, helps (I felt beneficial almost immediately).
My physical exercise consisted of fitting a pedal between the legs of a chair and pedaling for about an hour, it was quite painful and tiring and to help me in the effort an hour before pedaling I drank the Friliver (supplement).
Also this passage helped me because I felt less discomfort during the effort,
Then to make everything less noisy, I kept a chair on which I put the tools of my hobby and since I had my hands free I gave life to my creations.
I made more than a hundred little trees with beads and many little angels in corn paste, grinding km.
Then finally the replacement therapy.
This is what I can tell everyone: never give up, 20 years ago a doctor told me that after 5 years I would end up in a wheelchair and today my legs still support me.
Maybe I was luckier than others, I don't know this but I tried to react as I could. I also have my moments, no, but I accepted my pathology because it is part of me and I hope that the research can give me and those who still need so many good prospects
You can look at my artworks at this link: https://www.facebook.com/ilcantucciocrearepersognare/
Hola Giussepina !!!! Felicitaciones por tu trabajo y tus ganas de vivir !!! Soy de Argentina ,paciente con Enfermedad de Gaucher , 50 años y siempre luché y sigo haciéndolo por mejorar mi calidad de vida !!!
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