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    Home > articoli > Fibriomialgia, sindrome ”snobbata”
    05
    mag.
    2005

    Fibriomialgia, sindrome ”snobbata”

    Condividi su:   Stampa

    Gentile Oliviero Beha, Sono una sua radioascoltatrice affetta da fibromialgia (FM) o sindrome fibromialgica. Lei probabilmente non avr? mai sentito parlare di questa sindrome, ma anche se non si tratta di una patologia degenerativa, ? altamente debilitante e colpisce ben il 2% della popolazione italiana e ben l'8% della popolazione statunitense.

    Si parla quindi di 1,2 milioni di italiani, anche se probabilmente questo numero ? corretto per difetto perch? molti non hanno una diagnosi precisa, tanto che in media questa sindrome viene diagnosticata dopo ben quattro cinque anni dalla comparsa dei sintomi, come alla sottoscritta.
    I sintomi maggiormente frequenti sono dolori a livello muscolare, tendineo
    e legamentoso diffusi in tutto il corpo, stanchezza cronica (detta anche
    CFS, sindrome spesso associata alla fibromialgia), depressione, sonno non
    ristoratore, difficolt? di concentrazione, sindrome del colon irritabile, frequenti formicolii, contratture, allergie, acufeni, ma la lista ? molto pi? lunga. Purtroppo la causa di questa sindrome non ? ancora conosciuta, pertanto i reumatologi che trattano i pazienti fibromialgici spesso prescrivono terapie
    multidisciplinari, che hanno per? lo scopo di ridurre i sintomi, senza agire
    all’origine di questi disturbi.
    La fibromialgia, pur colpendo un numero molto alto di italiani, ? una
    sindrome snobbata e molto poco conosciuta soprattutto dagli addetti ai lavori: sono pochissimi i medici di base che conoscono questa sindrome, ma anche i reumatologi spesso non sono all’altezza.
    Inoltre la fibromialgia non dispone ancora del riconoscimento ufficiale
    e a questo proposito in questi giorni ? stata organizzata negli USA una
    iniziativa di sensibilizzazione, denominata Million Letter Campaign, che
    consiste in un invio massiccio di mail alle autorit? da parte di fibromialgici,
    nella speranza appunto di un riconoscimento ufficiale e di un maggior
    investimento nella ricerca in questo settore.
    Si tratta per? solamente della prima iniziativa nel mondo di questo tipo
    e quindi Le chiederei gentilmente di parlare di questa sindrome nella sua
    trasmissione, nella speranza che ci possa essere maggiore informazione,
    perch? sono davvero molto pochi coloro che possono considerarsi guariti
    da questa sindrome.
    Le faccio notare che molto spesso i fibromialgici vengono considerati dei
    malati immaginari e degli ipocondriaci, non vengono pi? creduti neppure
    dai famigliari e dagli amici, vengono isolati dalla vita sociale, entrano
    comprensibilmente in crisi depressive e provano tremendamente una sensazione
    di solitudine, e purtroppo ci sono ancora molti reumatologi che considerano
    questa sindrome di natura psicosomatica, cosa che ? stato dimostrato non essere, come pu? leggere nell’allegato e nei siti che le ho indicato.
    Sperando che Lei affronti la tematica fibromialgia nella sua trasmissione
    (per la quale Le faccio i miei complimenti), Le porgo cordiali saluti.
    Ivana Rada
    PS: Se decidesse di parlare nella sua trasmissione di questa sindrome, le
    sarei grata se potesse avvertirmi di quando abbia intenzione di parlarne,
    in modo da poter informare il maggior numero di fibromialgici possibile
    (sono iscritta ad una lista di auto-aiuto denominata Fibroamici, per la
    quale trova il link qui sotto)
    Link per una maggiore conoscenza della fibromialgia:

    http://www.fibromyalgia.it

    http://www.weiss.de/340.0.html

    http://it.geocities.com/fibroamici2004

    http://www.sindromefibromialgica.it/

    ————
    Cara Ivana, lettere come la Sua moltiplicano la mia frustrazione. Da giugno 2004 la Rai ha chiuso la mia trasmissione impedendomi di essere utile a Lei e a migliaia di cittadini/ascoltatori dei cui problemi tentavo di farmi molto modestamente carico.
    Per ora posso solo testimoniare la Sua necessit? e la mia impotenza mediatica, diffondendo sul mio Blog la questione.
    Appena potr?, me ne occuper?. E’ una promessa.
    Oliviero Beha————

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