"La guarigione può non esser garantita, ma la cura deve esserlo"

Intervista a Giuseppina Pintori, presidente Inversa Onlus, sui problemi di diagnosi, cura e presa in carico da parte del servizio sanitario nazionale dell’HS

Si chiama Idrosadenite supporativa. Ma modi per denominarla sono diversi: malattia di Verneuil, acne inversa, HS – acronimo di Hidradenitis Supporativa. Forse anche questo denuncia una confusione originaria. La difficoltà nel riconoscere prontamente questa patologia che si presenta con lesioni sulla pelle in regioni del corpo come le ascelle, l’inguine, sotto le mammelle e a ridosso del perineo. Se n’è discusso nel convegno organizzato dall’Osservatorio sanità e salute giovedì 27 ottobre a Palazzo Ferraioli a Roma. Giuseppina Pintori individua i vari step affinché il sistema sanitario nazionale si predisponga a un migliore intervento contro questa malattia invalidante.

Presidente Pintori, qual è innanzitutto il primo step per combattere la malattia?

Riconoscerla. La prima fase sono i centri sanitari, i medici di famiglia, ma anche il senso comune che deve capire certe piccole affezioni debbono esser curate non trascurate.

Cosa fare quindi?

La nostra prima indicazione è fare rete. Abbiamo creato un’associazione, Inversa Onlus. Credo che l’approccio con l’associazione sia un canale di confronto importante e preminente nel primo riconoscimento della malattia.

Cosa chiedete innanzitutto come associazione?

Che sia fatta un’analisi epidemiologica. Non si conoscono realmente i dati sulla diffusione di questa malattia. E i dati che vengono esplicitati sono ancora approssimativi.

Quanto costa al malato sostenere le cure dell’Hs?

Dipende chiaramente dal livello di aggravamento della malattia ma possono arrivare tranquillamente a seicento euro al mese.

Quindi la richiesta della presa in carico da parte della sanità pubblica…

Certo. Un malato non può essere lasciato da solo a sostenere queste spese. Né può essere abbandonato a diversi approcci di cura nel quale oltre al dermatologo c’è anche lo psicologo perché presenta effetti stressanti e di allontanamento dalle relazioni molto gravi.

Dove può arrivare questa malattia?

I medici non lo dicono, le pubblicazioni ufficiali non lo confermano, ma noi lo sappiamo: può portare anche alla morte. Sì! E’ successo.

Il problema però è che anche in sede medica non ci sono garanzie di riuscita nella cura…

Vero. Ma se la guarigione può non esser garantita, la cura deve esserlo e lo deve essere per tutti.

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“La guarigione può non esser garantita, ma la cura deve esserlo”

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