MPS Spain publishes the book of relatos “Fabry Now: Know, Accept and Share”

Share: 

Madrid, 28 May 2014. The Association of Mucopolisacaridosis and Syndromes Related (MPS Spain) has published the book of relatos literary: “Fabry Now: Know, Accept and Share” that recopila the relatos published in with motive of the Contest Solidario, summoned does some months by the association. Each section of this book begins with the relatos winning: The truce in the category “Know”, Am a chewing gum in “Accepting” and Sisters in “Sharing”. Besides, it includes the relate short Knowing to my baby that received the prize of the Public.

This initiative was set by MPS Spain, with the sponsorship of the company biofarmacéutica Shire, through the platform web “Fabry, now also we” (www.fabryahora.com) with the aim to give to know the illness of Fabry, a little known pathology and minoritary that suffer among 8.000 and 10.000 people all over the world, as well as lean to the affected and his familiar.

The book recopilatorio has been edited in format ebook and paper and is on sale by a symbolic price through the web www.bubok.es. The profits will go allocated entirely to MPS Spain, that will allocate them to the financing of projects of investigation and to the help of families of affected that they can need it.

Clara Obliged, Argentinian writer-Spanish, founder of the Workshop of Creative Writing of Clara Obliged and collaborator in diverse media; Jordi Cruz, president of MPS Spain; Mónica López, internista in the Central Hospital de la Cruz Red in Madrid; and María José of the Elm,  one of the ambassadors of Fabry Now, went the members of the jury commissioned to choose to the rewarded among the 24 relatos that in his day received more than 20 votes by the users of the web page

From the jury has wanted to stand out the quality of the distinct works that have presented to this contest and has valued the solidarity of the participants in this type of announcements: “we Are loved with the received that has had the initiative and feel us very appreciated with all the participants”, has explained Jordi Cruz, the one who has stood out the big difficulty that has supposed to choose to an only winner by category.

The winners of the distinct categories of relatos, as well as to the that has received the Prize of the Public, received like prize an eBook personalised, a diploma of winner and the book recopilatorio.



About Fabry. Now Also We

“Fabry. Now also we” was born because the scientific evidence has discovered that the women no only are bearers of the illness of Fabry, as it came believing traditionally. Till lately it spoke that the woman only transmitted this pathology, but that did not suffer his symptoms. This has spent to the infradiagnóstico in women with illness of Fabry and to that they have received his treatment late. Nowadays it knows that in a lot of cases the women also manifest his symptoms and signs.

Thus, “Fabry. Now also we” directs especially to the women affected by illness of Fabry, with the main aim to contribute light to this confusion and communicate to these women the importance of a precocious diagnostic, as well as that they are treated from the earliest phases of his illness. Equally, this initiative has by aim give to know that, if you are affected by the illness of Fabry, exists 50% of possibilities that your children inherit it, by what suits to do a follow-up to the descendants.

For more information: www.fabryahora.com 



On the illness of Fabry

The illness of Fabry is a disorder of lysosomal deposit that interferes in the capacity of the human body to degrade the globotriaosilceramida (Gb3) because of the deficiency of an enzyme (α-galactosidasa To). It affects so much to men as to women and can present through signs or symptoms inespecíficos and of variable degree, like cardiovascular dysfunction and/or renal, intense ache or quemazón, intolerance to the heat, cutaneous injuries, ailments gastrointestinales, loss of audition, problems of vision, etc. With regard to the general population, the hope of life of the patients with illness of Fabry can reduce 20 years in the case of the men and 15 in the one of the women. The main causes of death are the renal failure, the cardiomiopatía and the events cerebrovasculares (ej. apoplejía). It estimates that it affects to among 8.000 and 10.000 people in all the mundo1.



About the Association of the Mucopolisacaridosis and Syndromes related (MPS)

Entity Declared of Public Utility in order of the Home Office.

The Association of the MPS is an entity declared of public and non-profit utility that is born fruit of the Asociacion Sanfilippo Spain in 2003 with the end to advise, lean and inform to the families of affected by this group of minoritary illnesses.

Formed by a scientific committee, medical aides, affected and familiar, his aims are to boost the scientific investigation on the causes, development and therapies for the mucopolisacaridosis and syndromes related; promote seminars, conferences and public acts to favour the exchange of scientific knowledge and divulging of the minoritary illnesses; in addition to promoting, in the measure of the possible, performances of preventive character.

For more information: www.mpsesp.org



About Shire

Shire Is a company biofarmacéutica through which research and develop treatments for genetic pathologies of drop prevalencia or rare illnesses: Illness of Fabry, the Syndrome of Hunter, the Illness of Gaucher and the Angioedema Hereditary. His mission is to improve the quality of life of the people that suffer these pathologies and his familiar and put to his disposal innovative drugs that help them face his illness.

Shire Centres his activity in concrete therapeutic areas with the end to offer a service of excellence to patients, carers and professional of the health.

For more information: www.shireiberica.es



1. Meikle PJ, Hopwood JJ, Clague AE, Tortoiseshell WF. Prevalence of lysosomal storage disorders. Journal of the American Medical Association 1999; 281: 249-254

News: http://www.medicina21.com/notas_de_prensa/v7599-mps_espana_publica_el_libro_de_relatos_fabry_ahora_conocer_aceptar_y_compartir.html