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I wanted to bring you a very unique voice – a very unique perspective – on rare diseases this time; a doctor will look at someone’s illness one way while the patient will obviously have their own thoughts. In this case, however, the doctor is the patient or the patient the doctor as I bring you the words of ‘Alice’, a physician who suffers from a rare disease herself:
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For a physician- a rare disease that has no currently known treatment is an intriguing challenge.
For a patient- a rare disease that has no currently known treatment is mostly a scary experience.
For a physician- a patient with a rare disease that doesn’t seem to significantly respond to any known treatment, requires the use of his/her best professional scientific and humanistic skills.
For a patient-having such a disease, requires mostly finding the best way to live with it, and finding a physician he/she could trust to be his partner in this quest.
For a physician finding the answers to this intriguing puzzle is very rewarding.
For a patient when such answers are found means getting back at least part of what once was their life.
For a physician, who is also a patient with a rare disease that doesn’t fit the “box” in its course, diagnostic tests and response to treatment it is both an intriguing challenge and a scary experience. It requires the best of her scientific and humanistic skills to try and find the answers, as well as the best possible way to live with it. And if she is lucky also eventually find a physician who is ready to become her true partner sharing his and her knowledge, experience and skills to find the best management approach together.
Having a rare, hard to diagnose and manage MuSK MG, in the midst of my very promising career as a haematologist, made me understand first hand what it means to have such an illness.
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If you are affected by a rare disease, or you know someone who is, please feel free to contact me if you would like to share your experience on here as that would be more than welcome!