living with disease

Alaskan Goes Home for Treatment and a Fresh Start

I tell people I'm unique - almost one of a kind. I am 40 years old and have recently been diagnosed with a rare type of MDS having an unusual deletion 12q cytogenetic abnormality, known MDS 12q (-), or MDS 12q minus.  I was diagnosed in February of 2015 at age 38, however my health struggles began several years before that. I had been living in Alaska for nearly twenty-five years. In 2008, I was diagnosed with lymphocytic colitis (also a rare disease for someone of my age).

I'm Like You: Vincent Rusak

Vincent Rusak of New Kensington, PA, traveled extensively during his 26-year career as an expert electronic service technician. For 15 of those years, he was also a regular blood donor in his community.
His father’s quadruple bypass surgery, as well as a deep compassion for his fellow man, were Vince's motivation for contributing to his local blood banks every six to nine months. Little did he know that this selfless habit would someday save his life.

I'm Like You: Briana Donis

Homecoming queen and top student Briana Donis always wanted to go to the University of Texas at Austin.
“I was having a pretty awesome year.  I was very well known at school and I had a boyfriend.”  She had just been accepted at the school of her choice when she noticed how really tired she was all the time. And then the bleeding started.

My Life is Making a Difference

Beginning September 2012, I just wasn’t feeling quite right. I was increasingly fatigued and there were some perplexing bleeding incidents, as well. After many months I experienced partial vision – just little areas of vision that were blank. Internal bleeding in the eyes was causing this, and my eye doctor knew it was serious and even thought it could be leukemia.

2014 Matthew Debono Scholarship Winner Annette Lysan

In March, Annette had the honor of singing a solo for her high school senior show. She chose to sing “I Was Here”, a song recorded by the group Lady Antebellum and others. The lyrics for the chorus start with “I wanna do something that matters – say something different – something that sets the whole world on its ear – I wanna do something better with the time I’ve been given.” She considers it her personal anthem.

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