Samuele grillo parlante

Ciao,
sono Samuele.
ho 11 anni e vivo a Trepuzzi, provincia di Lecce, Italia.
Lo studio mi impegna molto, ma trovo sempre il tempo per le mie passioni (musica, libri, teatro).
Qui partecipo ad un saggio della scuola di teatro, che frequentavo prima del Covid, ed interpreto il "Grillo Parlante" del "Pinocchio" di Collodi. Sempre avanti, non mi abbatto.
TOGETHER WE ARE STRONG. 💕

Parco Le Risorgive

 

Hello, my name is Giuseppina, I am 52 years old, I am of Calabrian origin but I live in the province of Verona. I have been a Pompe patient for 22 years. I am sending a photo taken in the Le Risorgive park located in Castel D 'Azzano (VR), the town where I live. I wish all of us a happy anniversary. 

An affectionate hug.

A Pompe Life

We are not our disease, our life deserves to be lived fully and we must learn to enjoy every moment!

Elisabetta, Italy, 41

 

Nicola (Italy)

La gioia, l'amore, la determinazione, la volontà, la pazienza:  La forza ...

Nicola, 3 anni e 1/2, malattia di Pompe a esordio infantile

Bari, Puglia, Italia

 

Joy, love, determination, willpower, patience: The strength ...
Nicola, 3 and 1/2 years old, infantile onset Pompe disease
Bari, Apulia, Italy

A walk with a sea view in Sicily, Italy

Over this past year there have been very few chances to be outside, so why not enjoy them with a nice and refreshing view of the Mediterranean Sea?

 

Happy International Pompe Day from Sicily!

Fabio, 42, Italy

#internationalpompeday #PompeAroundTheWorld #TogetherWeAreStrong

Silvana Uboldi (Italy)

Sono Silvana Uboldi sono affetta da glicoginosi tipo 2 ... abito ad Albairate (Mi).

I am Silvana Uboldi I am affected by GSD type 2 .. I live in Albairate (Mi).

My hope for the future

My Hope For The Future is no longer a hope for a miracle. fortunately we have research on our side, which continues with good results. My hope, now, is for everyone to receive the same type of treatment and care by doctors, with no inequalities, regardless of where you live or  if you live close to a center of excellence, even within the same country. My hope is for all of us to receive the same treatments and care, by expert physical therapists, and by committed, dedicated and well-informed medical specialists. My hope is to be seen not as patients with a disease, but as persons, each one of us with different needs, like everyone does.

Elisabetta, 40, Italy

My Hopes

My Hope For The Future is personalized medicine and a personalized medical treatment to stop disease progression and to treat based on individual needs.

My Hope For The Future is multidisciplinary care delivered by a range of professionals working together as a team that addresses my clinical and psychosocial needs.

I hope also that no one in our community is affected by the current health emergency and we can all stay safe.

Happy International Pompe Day! 🍀

Fabio, Italy, 41

#HopeForTheFuture #HopeForPompe #InternationalPompeDay  #TogetherWeAreStrong    

Nordic Walking with Pompe!

Growing up as a kid and teenager I was very active and enjoyed playing tennis and riding a bike. With the muscle weakness caused by Pompe disease, I had to find something that I could still do, as well as enjoy.

Exercise has many benefits. It can ease muscle pain, lessen stiffness, and increase flexibility and mobility. It can also help stay active longer, have more energy, and improve physical and mental health.

However, exercise should be tailor made and take into consideration our specific needs, abilities, and disabilities, i.e., individualized adapted physical activity and the appropriate exercise for us, that we can also enjoy. That is why I tried and started practicing Nordic Walking!

Pushing myself (on the swing) to the very best of my ability

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.