Vince Nicholas, a founding member of Amyloidosis UK, shares why learning to advocate for yourself is one of the most important steps after a rare disease diagnosis and how proactive communication can shape better care.
Transcript
I think the big win in a rare disease, like amyloidosis, is that I became aware that you have to take control of your own destiny and be proactive and talking to the doctors and treating them and making sure that they treat you at the same level.
It doesn’t matter what questions you’ve got. It doesn’t matter how do you think it’s going to be.
Or if it’s silly question, just say it, because you know this is new to them as well as us. Really, no question is silly. So you must always be proactive about your own future and your own symptoms and medication.