Sunday, January 11, 2015

Can we do this? Mexico says YES!

IPWSO has given a lot to developing countries by way of support for their first conference, meeting, or workshop, and Mexico is no exception.  We are lucky to have Spanish-speaker, Mariona Nadal, who has a brother with PWS and many volunteer workers, including Marta Fernández, volunteer in Fundación Síndrome Prader Willi in Spain, who give up their time to help others in need.  Marta has written the following:

Prader-Willi Syndrome Symposium in Pachuca, Hidalgo (9-11 October): A lifetime experience.

For the first time in my life, and thanks to many people (IPWSO, Fundación Síndrome de Prader Willi in Spain, Fundación Mariajosé in Mexico), I have had the opportunity to travel to an international Prader-Willi Symposium.

Although I have only recently finished my undergraduate studies many people decided to trust in me as a speaker and the thankful parents and professionals, who attended the conferences, assured that they actually learnt something from my speeches, I am far more positive about what I have learnt from all of them!

These days, I have had the opportunity to learn how other people deal with Prader Willi Syndrome, not only in Mexico, but also in the United States with Dr. Angulo, who was in charge of the medical management of PWS. From Mexico I met some professionals too, the nutritionist Isabela Maldonado and the geneticist Dr. Queipo, who were also deeply involved with PWS. 

From Spain, we brought into discussion quite a different range of issues, I developed some aspects of psychological management and Mariona Nadal (board member of IPWSO and member of a PW family) developed family management of PWS, which, in my opinion, are as important as medical issues. We also had some government representatives with us, and I hope that we have also experienced the beginning of a political change in Mexico regarding PWS.

Moreover, I have had the unforgettable opportunity to listen to Jorge Moreno, an adult with PWS, who explained beautifully some experiences of his own life and his family. And I also met some other PW attendants and their families. I have talked to young, brave families, willing to learn, and to experienced families, also happy to learn from experts, but with significant contributions to share.   One of these families, whom I will never thank enough for these days, is Josefina’s who, despite of the fact that their angel is not any longer with them, organised the Symposium in order to help other PW families . But this is just an example of what I have witnessed. I have witnessed how even in the most difficult situations PW families join to face difficulties, understanding and helping each other, as much as they can. How they rely on those few, who can genuinely understand and share their experience, building a worldwide support community. 

Once again I realize that we are not so rare, that we are not alone, and that we have to be fearless, because the future of PWS is not waiting for us. The present of PWS is here, and we have the responsibility to make it as happy and as meaningful as possible.

Marta Fernández-López

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