A note from Dr. Cristofanilli

An "Invisible Hero"

I rarely post on Facebook and certainly do not discuss personal issues but, today is different. Sometimes destiny has unusual ways to direct events and teach us about the value of life. I want to talk about a young Italian woman that is no longer among us. Imagine her living in a small village outside a medium size provincial town less than 2 hours from Rome. This young woman has a normal family and an ordinary life (whatever this means today). Graduates from school and then, she decides that her life is going to be spent in that village, there in the same house where she was born. You would think this is pretty unusual and maybe it is. She has no dreams of major adventures (that we know) or plans for dramatic changes in her habits (she does not talk about it). She is somewhat shy and really focused on every day events and the need of her family. Because of her uncompromising and unselfish attitude, she will never find a stable job in a corrupted Country. Instead, together with her only sister, she will help her mother to care for her older grandparents and sick father. When they die in short order she find herself in an empty house and discovers that her happiness has gone quickly together with her young years. This should be fine but then, something terrible and unexpected happens. One day she feels something strange in her breast and, looking at the mirror she can see a swollen and red breast. How did this happen, what is going on? In the next few weeks those changes become painful ulcers and, when she finally talks to her sister and her physician is too late. She now has an advanced IBC. This young woman does not use social media, does not like to take selfies and post it anywhere and, does not want to travel to large University Hospitals looking for a miracle. She is determined to remain "home" no matter what till the end. The ulcers keep growing, she can barely breath and she still refuses any hospitalization and deals in silence with the intractable emotional and physical pain of this disease. She wants to be in her world, the only one she knows and trust and the one make her feel secure and she cares about. One morning, she goes to sleep and finally rests but, nobody notices because, she was "invisible" to the world of communication in spite of the fact that, she is another victim of the silent killer. How many women are out there with similar stories that we will never know? This "invisible hero" was my cousin and, I will never forget the strange destiny that brought IBC to my family and took her life. I want to celebrate her life and sacrifice to tell her story to the world that she never knew, her IBC sisters. Rest in peace Fausta DeNardis (3/22/76-3/17/18).

Comments 2

  1. Beautifully written Massimo. I know your ‘calling’ is medicine, but your second ‘calling’ is writing. The words you wrote in our book “Nobody is Listening” https://www.amazon.com/Nobody-Listening, have brought many to tears about your compassion for finding the cause and cure for IBC, and amazes many who have read the book.
    I truly thank God that fate brought us together in 2006, which eventuated in a movement of advocacy that continues today. Some people don’t know you started the first clinic in the world at MD Anderson in Houston Texas in 2006, and you haven’t stopped your fight since then. Others also don’t know you co-founded our foundation, http://www.eraseibc.org, with myself and Jenee Bobbora.
    Thank you for your enduring spirit that has lit a candle for so many other physicians to follow in your path.

    God Bless you, Dr. C.

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