Which advice would you give to someone who has just been diagnosed with McCune Albright?

Advice for the newly diagnosed with McCune Albright, written by people who have lived it. What they wish they had known on day one.

2 answers

Be careful who and what you use as reference. Everyone with MAS is different. There is no mold for this disorder. It is all different. It can present in similar ways but will develop differently.

Posted Jun 9, 2017 by Ellasyn 810

Translated from portuguese Improve translation

Any way use this to become a victim. Accept the condition and not stay all the time thinking, continue your life... There are people in worse situation. Follow up with a psychologist/psychiatrist is always good to talk and keep calm is not something for which we should despair).

Posted May 27, 2017 by Julia Pivoto Schmitt 1100

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Stories of McCune Albright

MCCUNE ALBRIGHT STORIES

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MY LIFE

Dear All , I discovered my disease when i was 19 years old. I had strong and frequent headaches and , after a clinical examinations, the diagnosis was a fibrous dysplasia of the skull. AFter a few years , unfortunately I discovered have it...

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by Tatiana

FD AND MAS

My brother and I both have FD - but I also have MAS. So little know about either disease. Difficult finding providers who really understand. Am told that we are the only sibs known to have FD.