La Colangite Biliare Primitiva (PBC) è una malattia #colestatica#rara che colpisce prevalentemente le donne tra i 40 e i 60 anni. Questa patologia provoca l'accumulo di bile nel fegato, danneggiando l'organo e compromettendo la qualità della vita a causa di sintomi debilitanti come il #prurito intenso e #affaticamento cronico, che rendono difficoltose le normali attività quotidiane.
In occasione del #PBCAwarenessDay, la giornata internazionale di sensibilizzazione sulla #PBC, celebrata ogni anno la seconda domenica di settembre, il team di Ipsen ha incontrato Robert Mitchell-Thain, Presidente della PBC Foundation, per conoscere più da vicino il tema di quest'anno: #ProvideBetterCare. Questa campagna pone l’attenzione sull'importanza dell'ascolto di chi vive con questa patologia, affinché si possano avere cure personalizzate e mirate alle proprie esigenze: che si tratti di rallentare la progressione della malattia per evitare un trapianto di fegato o di alleviare i sintomi per migliorare la qualità della vita.
💬 Come ha affermato Robert Mitchell-Thain: "Fornire cure migliori significa concentrarsi sui bisogni della persona e individuare il trattamento migliore. Per i medici, questo implica ascoltare il paziente, e per i pazienti, significa poter comunicare apertamente con il proprio medico."
Ipsen per le persone con malattie rare.
Noi ci siamo.
#Ipsen#PBC#RareDiseases#MalattieRare#ProvideBetterCare#PBCFoundation
Hi, my name is Robert Mitchell Thane. I'm the CEO of the PBC Foundation. So I've got involved in BC some 30 years ago when it came into my life, when my mother was diagnosed with what was then known as primary biliary cirrhosis. At that point in time, she was given five years to live and yet here we are 30 years later and she's still alive and well. I got involved because I saw her story and I wanted really to try and fight as best I could to make sure that. As many patients as possible with PBC have the access to the information in the support when, how and where they need it. BBC Awareness Day is an opportunity for us, the entire community, to talk about PBC and to raise awareness. PBC is rare. It's a liver disease and that makes it somewhat uninteresting. So it's a struggle to to raise awareness. And yet when you think about it, one in 1000, women over the age of 40 has BBC. So there are people out there that will have the condition and have no idea. So PBC Day is an opportunity to to talk about it, to share stories, to raise awareness and to make sure that the wider public has an idea of what PBC is. This year, 2024, on PBC Day, we're asking the PBC stands for Provide Better Care. Here at the foundation, we're often asked what is the PBC journey? And the challenge is that well. The PBC journey doesn't exist. There are thousands and thousands of patients around the world and each of them have an individual journey. There are three parts to PBC. There is the liver biochemistry, your actual liver tests and and what the liver is doing. Then there's the cell change within your liver. So is your liver damage to the point of cirrhosis and there's a long way to go before you ever get there. But then there's the actual symptoms of living with PVC. And how that affects your quality of life on a day-to-day basis. And those 3 aspects don't correlate, they don't feed into each other. And so it's really, really difficult for anyone person. To know what's happening with your PVC unless. You listen. To that one person, it's really important to remember that living with PVC is an individualized journey. Some patients will have a risk of disease progression. Some patients will have a risk of symptom. Progression in terms of their quality of life and how their life is affected day by day. When we focus on providing better care, the key principle is who's in front of Maine and how best do I treat them? And for a clinician, that means listening to your patient. And for a patient, that means talking to your doctor. And if you're not quite sure what that question looks like, get in touch with any of the patient support organizations that are in your area. And ask. So I sit here today in front of you as the CEO of the PBC Foundation. And nothing. Nothing would make me happier. And to close our doors. Because BBC is cured. It's dealt with, it's treated. And every single patient gets their care. And treatment they need where they need it, how they need it, without ever needing to come to us.
CEO RARE Revolution Magazine and Co-Founder & Trustee of Action for XP
1 meseBrilliantly said Robert and I think echoed by lots of us who are leading rare disease support groups.