Dal 26 maggio al 3 giugno come molti di voi sapranno si svolge la settimana nazionale (9 giorni) della sclerosi multipla, che avrà il suo culmine il 30 maggio, proclamata giornata mondiale della SM.
From 26 May to 3 June there is the National Week (9 days) of Multiple Sclerosis in Italy, which will culminate on May 30, proclaimed World Day of MS.
It 's nice to see all this hype about the disease that strikes me so many years, certainly this week there will be more donations than usual in favor of associations dealing with it, hopefully more research, more funds will be possible at our disposal.
Sure, right now we already have available many drugs: interferon, Tysabri, oral medications (over the past several days have come out) and other drugs continue to go out for immonumodulating, beta-blocking, immunosuppressing ... but often we forget to say none of these drugs takes away the problem, sometimes it slows down, sometimes it crashes, maybe even at the risk of contracting a beautiful PML. But basically, for fear of being hurt, more hurt, why not submit to these therapies? The neurologist says, "if I were you I would do it." But you're not-a neurologist-in our place, we who do injections, infusions, or simply ingest the pills, but you never really know, see and live on our skin, it is because of us who do statistics, you can try drugs, which can not demonstrate and prove a theory.
After 12 years of disease and 10 of interferon have my doubts and my point of view. Last year I decided to stop the medication for my will, I was tired, I could not remember more what life was like without interferon, but stopped once I get used to it so quickly. After 9 months I have had a relapse, and the neurologist I was replaying the exact same, damn interferon: according to him, I could not do anything, the situation has worsened, the Rebif 22 was the only solution. I was forced to leave after 11 years.
For several months looking for another neurologist, do not expect good and honest, but at least respectful of the patient.
I think everyone should decide on his own life, acting as he thinks best for himself.
For this we need information, so much information, understand what the right news (it's not easy). More you know, you can make moredecisions for yourselves.
The National Week of the SM is an information and awareness about people who are not aware of the disease, to take stock of the situation, so I could sum up the AISM (Italian multiple sclerosis association)"promo" .
To learn more about MS, please drop me and I will tell you through my experience of how to live with Multiple Sclerosis.
See you soon
S.
E' bello vedere tutto questo clamore intorno alla malattia che mi colpisce da tanti anni, sicuramente in questa settimana ci saranno più donazioni del solito in favore delle associazioni che se ne occupano, si auspica più ricerca, possibili ulteriori mezzi saranno a nostra disposizione.
Certo, ora come ora già abbiamo a disposizione tantissimi farmaci: interferoni, tysabri, farmaci orali (negli ultimi tempi ne sono usciti diversi) e altri farmaci che continueranno ad uscire per immonumodulare, betabloccare, immunosopprimere...ma spesso ci si dimentica di dire che nessuno di questi farmaci toglie il problema, a volte lo rallenta, a volte lo blocca, anche magari con il rischio potrebbere di contrarre una bella PML. Ma in fondo, per paura di stare male, più male, perchè non sottoporci a queste terapie? Il neurologo ti dice: "io se fossi al posto tuo li farei". Ma tu-neurologo-non sei al posto nostro, siamo noi che facciamo iniezioni, infusioni, o ingeriamo semplicemente delle pasticche, ma tu non lo sai veramente, vedi e vivi sulla nostra pelle, è grazie a noi che fai statistiche, che puoi provare i farmaci, che puoi dimostrare e non dimostrare una teoria.
Dopo 12 anni di malattia e 10 di interferone ho le mie perplessità e il mio punto di vista. L'anno scorso ho deciso di interrompere il farmaco per mia volontà, ero stanca, non mi ricordavo neanche più come fosse la vita senza interferone, ma una volta smesso ho fatto presto ad abituarmi. Dopo 9 mesi ho avuto una ricaduta, ed il neurologo mi ha riproposto lo stesso identico, maledetto interferone: a detta sua, non potevo fare altro, la situazione sarebbe peggiorata, il Rebif 22 era l'unica soluzione. Sono stata costretta ad andarmene dopo 11 anni.
Da diversi mesi cerco un altro neurologo, non pretendo bravo e onesto, ma almeno rispettoso nei confronti del paziente.
Credo che ognuno debba decidere della propria vita, agendo come crede meglio per se stesso.
Per questo ci vuole informazione, tanta informazione, capire quali siano le notizie "giuste (e non è facile). Più ne abbiamo, più saremo in grado di prendere delle decisioni per noi stessi.
La settimana nazionale della SM è una campagna di informazione e sensibilizzazione verso chi non è a conoscenza della malattia, per fare il punto della situazione, così potrei sintetizzare il "promo"dell'AISM.
Se volete saperne di più sulla SM scrivetemi, vi racconterò di me e attraverso la mia esperienza di come si vive con la Sclerosi Multipla.
A presto
S.
From 26 May to 3 June there is the National Week (9 days) of Multiple Sclerosis in Italy, which will culminate on May 30, proclaimed World Day of MS.
It 's nice to see all this hype about the disease that strikes me so many years, certainly this week there will be more donations than usual in favor of associations dealing with it, hopefully more research, more funds will be possible at our disposal.
Sure, right now we already have available many drugs: interferon, Tysabri, oral medications (over the past several days have come out) and other drugs continue to go out for immonumodulating, beta-blocking, immunosuppressing ... but often we forget to say none of these drugs takes away the problem, sometimes it slows down, sometimes it crashes, maybe even at the risk of contracting a beautiful PML. But basically, for fear of being hurt, more hurt, why not submit to these therapies? The neurologist says, "if I were you I would do it." But you're not-a neurologist-in our place, we who do injections, infusions, or simply ingest the pills, but you never really know, see and live on our skin, it is because of us who do statistics, you can try drugs, which can not demonstrate and prove a theory.
After 12 years of disease and 10 of interferon have my doubts and my point of view. Last year I decided to stop the medication for my will, I was tired, I could not remember more what life was like without interferon, but stopped once I get used to it so quickly. After 9 months I have had a relapse, and the neurologist I was replaying the exact same, damn interferon: according to him, I could not do anything, the situation has worsened, the Rebif 22 was the only solution. I was forced to leave after 11 years.
For several months looking for another neurologist, do not expect good and honest, but at least respectful of the patient.
I think everyone should decide on his own life, acting as he thinks best for himself.
For this we need information, so much information, understand what the right news (it's not easy). More you know, you can make moredecisions for yourselves.
The National Week of the SM is an information and awareness about people who are not aware of the disease, to take stock of the situation, so I could sum up the AISM (Italian multiple sclerosis association)"promo" .
To learn more about MS, please drop me and I will tell you through my experience of how to live with Multiple Sclerosis.
See you soon
S.
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