Maria Giovanna Tortora, 32 years old, received the diagnosis of facio-scapulo-humeral dystrophy at 14. At the time, there was still not much information about the disease.

For about a year he has been in charge of coordinating the FSHD Group of UILDM, in collaboration with the Vice President Stefania Pedroni. The main objectives it wants to achieve are to connect people with Fshd, to better understand their needs and experiences, and to provide medical-scientific and research updates. Thanks to the "Epithe4FSHD" project, the Group will take care of selecting some contents from the FSHD Society website to make them accessible to the Italian community. A very important collaboration, which allows not only to update but also to learn to communicate in a different way.

How did you get to know UILDM?

In 2018, at the NeMO in Milan, Dr. Valeria Sansone introduced me to Fabiola Maria Bertinotti (veteran FSHD patient advocate for UILDM in international contexts, editor's note). Thanks to Fabiola, I joined UILDM and we began to work around the idea of ​​creating a group totally dedicated to FSHD patients.

You have been coordinating the group for over a year now, how is it going?

People have started sharing strategies on daily disease management such as mobility exercises, tricks to rest in more relaxed ways, latest news in scientific research but also a lot of humor. For my part, I am learning a lot by moderating the group and confronting myself with interesting people who come from all over Italy.

Why joining the group?

For many very good reasons, I would say. Above all to offer suggestions to those who, like you, are living an experience similar to yours, but also to propose topics for discussion, and, finally, to stay updated on the latest news through reliable sources of both national and international scope. Last but certainly most important: make friends! We are living through a historical time when research is finally accelerating and the international community, both health professionals and patients, has made great strides. It is our firm belief at the UILDM FSHD group that being together helps to proceed more effectively and quickly. Finally, I would like to underline that being an integral part of a highly experienced and long-standing patient’s association such as UILDM gives us high-level social, clinical and structural advantages and perspectives, let alone that it is like living in a beautiful family, in a collaborative and welcoming environment, truly open to all, optimistic and creative.

 

Why, in your opinion, should a young person approach Uildm and the world of associations?

Honestly, before joining UILDM, I did not suspect that I had an innate propensity towards being with others, listening and being listened to, participating in events that put myself at the center of common and innovative interests and topics that build a day by day a better future for me, for my family, for the FSHD community and, in an even broader sense, for the social and human progress of the society in which we live. In short: it is a breath of fresh air and I recommend it to everyone!

 

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