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Myasthenia Gravis Learning Zone

Transcript: Living with MG: Advice from a patient

Last updated: 6th Jun 2024
Published: 6th Jun 2024

Dr Renato Mantegazza and Domenico Montalto

Interview recorded Apr 2024. All transcripts are created from interview footage and directly reflect the content of the interview at the time. The content is that of the speaker and is not adjusted by Medthority.

Do you want to say anything else to explain your personal feeling about your situation? If you ask me, I can add that when people that don't know that I have a disease ask me, Why have you had disease? You look so good. Why? You can't say you are not good.

But inside me, I would die because they cannot understand our needs because it's something that don't cause you some alteration in your feelings or in your looking. So if I can, I don't run, but if I can walk, they think that I'm good, but I am not.

Is there anything that you would like to say to other patients that will, you know, encounter your situation in order to, you know, give the better advice possible for them? Step by step, you have to follow your life step by step.

Don't run because you can't, but you can walk, And that's a very important statement, step by step. What we have to do is to get the diagnosis in a very short time, but then everything, particularly in the field of treatments should be done, you know, step by step, checking for the best situation, for the best treatment for each patient in order to get, you know, what we call the personalised medicine that is the best for each patient.

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