sabato, dicembre 23, 2006

Welby muore, ma la battaglia continua


E così Welby è morto; qualcuno ha avuto il coraggio di staccare la spina e la pietà di compiere quel gesto.
Una sola persona dunque, in tutti questi mesi di sofferenza e disperate richieste da parte dell’uomo malato di distrofia muscolare, ha fatto quello che chiedeva con disperazione: Un medico che, per altruismo, ora sta rischiando molto.
Questa è una storia piena di “no”, piena di veti e di chiusure. Una storia che ribadisce quanto poco l’uomo si fidi dell’uomo e quanto sia necessario per certe “entità”, come stato e Chiesa, mantenere le proprie posizioni piuttosto che adattarsi al buon senso.
Io speravo che la volontà di Welby venisse esaudita. Il suo, evidentemente, non era un capriccio o una manovra politica; Welby voleva morire, lo voleva senza ombra di dubbio. Ha combattuto per se stesso e per tutti quelli che, come lui, chiedono di addormentarsi in pace.
E’ chiaro che le questioni che riguardano la vita sono questioni che non ammettono leggerezze e forse, una legge che riguardi l’eutanasia meriterebbe di essere stilata da una mente illuminata e non da un burocrate qualsiasi del ministero della sanità.
C’è di più: a Welby sono stati negati i funerali religiosi, ennesimo atto di violenza nei confronti di un uomo che credeva profondamente.
Il punto focale della faccenda è la vita.
Ma cos’è la vita? Siamo sicuri che sia ancora vita quella in cui il nostro cuore continua a battere solo grazie ad una macchina ed il resto del nostro corpo giace inerte, in una tortura che potrebbe essere infinita?
Siamo proprio sicuri che sia vita quella?

Qui di seguito una pagina del blog di Piergiorgio Welby:
Il mio nome è Piergiorgio, la mia storia è simile a quella di tanti altri distrofici.
Ricordare come tutto sia iniziato non è facile perché la memoria non è accumulazione ma selezione e catalogazione. Forse fu una caduta immotivata o il bicchiere, troppo spesso sfuggito di mano etc. ma quello che nessun distrofico può scordare è il giorno in cui il medico, dopo la biopsia muscolare e l'elettromiografia, ti comunica la diagnosi: Distrofia Muscolare Progressiva.
Questa è una delle patologie più crudeli; pur lasciando intatte le facoltà intellettive, costringe il malato a confrontarsi con tutti gli handicap conosciuti: da claudicante a paraplegico, da paraplegico a tetraplegico, poi arriva l'insufficienza respiratoria e la tracheotomia.
Il cuore, di solito, non viene colpito e l'esito infausto, come dicono i medici, si ha per i decubiti o una polmonite.
Io ho raggiunto l'ultimo stadio: respiro con l'ausilio di un ventilatore polmonare, mi nutro di un alimento artificiale (Pulmocare), parlo con l'ausilio di un computer e di un software.
Per anni e anni ho sperato che la ricerca scientifica trovasse un rimedio. Oggi, che le prospettive di una cura potrebbero, grazie agli studi sulle cellule staminali, sia adulte che embrionali, trasformarsi da speranza in realtà, sempre più ostacoli si frappongono sul cammino di una ricerca libera.
Questa malattia non è una maledizione biblica, è una malattia genetica che può essere sconfitta grazie alla diagnosi prenatale: i villi coriali, l'amniocentesi e soprattutto la diagnosi preimpianto.
In Italia ci sono oggi circa 2.000 bambini con distrofia muscolare Duchenne. L'incidenza della distrofia miotonica, la più comune distrofia muscolare dell'adulto, è di approssimativamente 135 casi ogni milione di nascite (maschi o femmine). L'incidenza della distrofia dei cingoli è di circa 65 casi per milione di nascite e quella della distrofia facioscapolomerale è ancora inferiore. Considerando insieme tutte le principali malattie neuromuscolari ereditarie, verosimilmente ne risultano colpiti in Italia circa 30 persone ogni 100.000 abitanti, ossia oltre 17.000 persone.
Se delle dispute capziose e, spesso, ideologiche dovessero ritardare la scoperta di una cura e condannare anche un solo bambino a vivere il dramma che io ho vissuto e sto vivendo...beh, pensateci! Pensateci questa estate quando vi tufferete, affronterete un sesto grado, percorrerete un sentiero con la mountain bike...

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