Νόσος Fabry: Τα σπάνια νοσήματα δεν είναι…και τόσο σπάνια.

Μια ασθένεια ορίζεται ως σπάνια στην Ευρώπη όταν επηρεάζει λιγότερους από 1 στους 2.000 ανθρώπους. Όμως, ενώ κάθε μεμονωμένη ασθένεια είναι σπάνια, αθροιστικά οι σπάνιες ασθένειες είναι πολλές επηρεάζοντας περίπου το 5% του παγκόσμιου πληθυσμού. Αν, μεταφορικά, όλοι αυτοί οι άνθρωποι ήταν συγκεντρωμένοι σε μια χώρα, θα «δημιουργούσαν» την τρίτη μεγαλύτερη χώρα του κόσμου. Υπάρχουν περισσότερες από 6.000 γνωστές σπάνιες ασθένειες και αρκετές από αυτές επηρεάζουν την καρδιά και το κυκλοφορικό σύστημα, επισημαίνει ο Χαράλαμπος Βλαχόπουλος, Καθηγητής Καρδιολογίας ΕΚΠΑ, Ιπποκράτειο ΓΝΑ.

 

Στη Μονάδα Κληρονομικών Καρδιαγγειακών Νοσημάτων της Α’ Καρδιολογικής Κλινικής του Εθνικού Καποδιστριακού Πανεπιστημίου Αθηνών (ΕΚΚΑΝ), μια ομάδα εξειδικευμένων ιατρών και ειδικών επιστημόνων εργάζεται προκειμένου να αυξήσει την ευαισθητοποίηση του ιατρικού κόσμου και του κοινού σχετικά με τις σπάνιες παθήσεις. Όπως δηλώνει ο Καθηγητής Καρδιολογίας και επικεφαλής της Μονάδας, κ. Βλαχόπουλος, «στόχος μας είναι να βοηθήσουμε στη διασφάλιση καλύτερων ποσοστών διάγνωσης των σπάνιων παθήσεων και της ισότητας στην καρδιαγγειακή υγεία».

Η νόσος Fabry είναι μια σπάνια, κληρονομική και απειλητική για τη ζωή νόσος, η οποία οφείλεται στην πλήρη έλλειψη ή τη μειωμένη δραστικότητα του ενζύμου α-γαλακτοσιδάση Α στα λυσοσώματα, με αποτέλεσμα τη συσσώρευση συγκεκριμένων λιπιδίων τα οποία ονομάζονται γλυκοσφιγγολιπίδια στα λυσοσώματα των κυττάρων στο ανθρώπινο σώμα. Πολλά οργανικά συστήματα προσβάλλονται, μεταξύ αυτών η καρδιά, οι νεφροί, τα νεύρα, το δέρμα, οι οφθαλμοί και το γαστρεντερικό σύστημα.

Συμπτώματα και διάγνωση
Ο τρόπος με τον οποίο εκδηλώνεται η νόσος εμφανίζει μεγάλη ποικιλομορφία. Στην κλασική μορφή της νόσου τα πρώτα συμπτώματα εμφανίζονται συνήθως στην παιδική ηλικία, κατά τη διάρκεια της πρώτης δεκαετίας της ζωής. Τους μικρούς ασθενείς ταλαιπωρούν οι κρίσεις πόνου, η υποϊδρωσία, οι γαστρεντερικές διαταραχές, το αγγειοκεράτωμα (μικρές δερματικές βλάβες κόκκινου χρώματος) και η δυσανεξία στη ζέστη και το κρύο. Στην εφηβεία και κατά την ενηλικίωση μειώνεται προοδευτικά η νεφρική λειτουργία, η καρδιά υπερτρέφεται (παχύνεται) και εμφανίζονται αρρυθμίες. Δυστυχώς, συχνά οι ασθενείς εκδηλώνουν εμφράγματα του μυοκαρδίου και αγγειακά εγκεφαλικά επεισόδια (παροδικά ή μη). Η καρδιαγγειακή νόσος είναι η κύρια αιτία θανάτου από την οποία πεθαίνουν οι ασθενείς με νόσο Fabry.

Η προσβολή της καρδιάς παρουσιάζεται συχνά νωρίς στη ζωή του ατόμου, κατά τη διάρκεια της εφηβείας, με την εμφάνιση των συμπτωμάτων περίπου 10 έτη νωρίτερα στους άντρες συγκριτικά με τις γυναίκες. Η υπερτροφική μυοκαρδιοπάθεια συνιστά την κύρια καρδιολογική εκδήλωση στην πλειοψηφία των ασθενών με νόσο Fabry. Συνεπώς ο έλεγχος για νόσο Fabry θα πρέπει να πραγματοποιείται συστηματικά σε όλους τους ασθενείς με υπερτροφική μυοκαρδιοπάθεια, συμπεριλαμβανομένου και του γονιδιακού ελέγχου στο γονίδιο GLA.

Η νόσος δεν αναγνωρίζεται, επί του παρόντος, όσο έγκαιρα θα μπορούσε. Ευτυχώς όμως αυτό αλλάζει στις μέρες μας καθώς πληθαίνουν οι διαγνωστικές τεχνικές και αυξάνει η ευαισθητοποίηση ασθενών και γιατρών. Η διάγνωση της νόσου Fabry μπορεί να καθυστερήσει κατά μέσο όρο 10 έτη μετά την εκδήλωση του πρώτου συμπτώματος. O έλεγχος μπορεί να γίνει από εξειδικευμένο ιατρό Καρδιολόγο, Νευρολόγο, Νεφρολόγο, Δερματολόγο ή Οφθαλμίατρο και βασίζεται σε βιοχημικό και γενετικό έλεγχο.
Η καρδιακή απεικόνιση, συμπεριλαμβανομένης της χρήσης μαγνητικής τομογραφίας καρδιάς, είναι πολύτιμη στη διάγνωση της νόσου Fabry, αλλά και στην παρακολούθηση της εξέλιξης της καρδιακής βλάβης και της ανταπόκρισης στη θεραπεία.

Θεραπευτική αντιμετώπιση

Σήμερα υπάρχουν διαθέσιμες θεραπείες, γι’ αυτό και η έγκαιρη διάγνωση είναι πολύ σημαντική. Οι θεραπείες αυτές επιβραδύνουν την εξέλιξη των βλαβών, σταθεροποιούν τη λειτουργία των οργάνων και βελτιώνουν τα συμπτώματα. Στην πρώτη από αυτές, τη θεραπεία ενζυμικής υποκατάστασης (αγαλσιδάση άλφα και βήτα), το ανασυνδυασμένο λειτουργικό ένζυμο χορηγείται ενδοφλεβίως, μία φορά κάθε δύο εβδομάδες.

Μία πιο πρόσφατη εξέλιξη στη θεραπευτική διαχείριση της νόσου Fabry είναι η μιγαλαστάτη, η πρώτη και μοναδική από του στόματος εγκεκριμένη θεραπεία για τους ασθενείς με νόσο Fabry και συγκεκριμένες μεταλλάξεις επιδεκτικές θεραπείας. Η μακροχρόνια χορήγηση μιγαλαστάτης σε ασθενείς με νόσο Fabry οδηγεί σε σταθεροποίηση της νεφρικής λειτουργίας και μείωση της καρδιακής υπερτροφίας. Πλεονέκτημα αποτελεί το γεγονός ότι το φάρμακο αυτό χορηγείται από του στόματος (και όχι ενδοφλέβια) μία φορά κάθε δύο ημέρες.
Το τοπίο αλλάζει για τους ασθενείς με νόσο Fabry. Η έγκαιρη διάγνωση της νόσου οδηγεί στην έναρξη της κατάλληλης θεραπευτικής αγωγής και αυτή με τη σειρά της στη βελτίωση της ποιότητας ζωής και της επιβίωσης των ασθενών.

Μονάδα Κληρονομικών Καρδιαγγειακών Νοσημάτων

Στην ειδική Μονάδα Κληρονομικών Καρδιαγγειακών Νοσημάτων (EKKAN) του Εθνικού και Καποδιστριακού Πανεπιστημίου Αθηνών (www.ekkan.gr, 2107231780) μια ομάδα ειδικά καταρτισμένων επιστημόνων παρέχει εξειδικευμένη ιατρική φροντίδα, συνολική υποστήριξη και συμβουλευτική των ασθενών και των οικογενειών με κληρονομικά καρδιαγγειακά νοσήματα, όπως είναι η νόσος Fabry ή άλλων σπάνιων νοσημάτων, όπως μυοκαρδιοπάθειες, αμυλοείδωση, αρρυθμιολογικά σύνδρομα και αορτοπάθειες.

«Πηγή: https://www.athensvoice.gr/life/health/731165-nosos-fabry-ta-spania-nosimata-den-einaikai-toso-spania»

1.037 thoughts on “Νόσος Fabry: Τα σπάνια νοσήματα δεν είναι…και τόσο σπάνια.

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  71. Member stuff says:

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