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In the winter of 2016, Patrick was training for the Rock N Roll half marathon in Nashville when he started experiencing chest pain while running. After visits to multiple doctors and a multitude of tests he was told in early June 2016 that an MRI indicated amyloidosis. Ultimately, he was sent to Mayo Clinic in Rochester, Minnesota. We went to the Mayo Clinic in June. The week consisted of roughly 30 appointments, over 20 needle pokes, and four biopsies. The culmination of this visit was a diagnosis of cardiac AL amyloidosis, stage 2.

AL Amyloidosis is caused by a bone marrow disorder. In short, proteins in the body (known as light chains) are misfolded and become amyloid. These misfolded amyloid proteins adhere to various organs around the body causing gradual damage and impacting the organ’s function. In Patrick’s case, the amyloid attached to his heart, causing his heart wall to thicken to twice it’s normal size and putting him into congestive heart failure. Amyloidosis is incredibly rare; it affects only a few thousand people in the U.S. each year, and most of them are over 65. The odds of getting this disease before turning 30 are roughly 1 in 150 million.

Over the last two years, Patrick has been on and off a variety of chemotherapy, immunotherapy, and clinical trial drugs.  This spring, his doctor recommended a stem cell transplant.  The transplant will occur this month at Vanderbilt University Medical Center.  The stem cell transplant will be the hardest thing he’s done.  Patrick will be inpatient for at least two weeks and will have a very long recovery journey ahead.

These shirts are intended to show Patrick our support for him.  We know he will beat this terrible disease and will come out the other side of this transplant stronger than ever. Even better, these shirts will support the Amyloidosis Foundation.  The Amyloidosis Foundation supports patients and families while promoting research, education, and awareness.

https://www.caringbridge.org/visit/patrickostrowski

http://amyloidosis.org/

In the winter of 2016, Patrick was training for the Rock N Roll half marathon in Nashville when he started experiencing chest pain while running. After visits to multiple doctors and a multitude of tests he was told in early June 2016 that an MRI indicated amyloidosis. Ultimately, he was sent to Mayo Clinic in Rochester, Minnesota. We went to the Mayo Clinic in June. The week consisted of roughly 30 appointments, over 20 needle pokes, and four biopsies. The culmination of this visit was a diagnosis of cardiac AL amyloidosis, stage 2.

AL Amyloidosis is caused by a bone marrow disorder. In short, proteins in the body (known as light chains) are misfolded and become amyloid. These misfolded amyloid proteins adhere to various organs around the body causing gradual damage and impacting the organ’s function. In Patrick’s case, the amyloid attached to his heart, causing his heart wall to thicken to twice it’s normal size and putting him into congestive heart failure. Amyloidosis is incredibly rare; it affects only a few thousand people in the U.S. each year, and most of them are over 65. The odds of getting this disease before turning 30 are roughly 1 in 150 million.

Over the last two years, Patrick has been on and off a variety of chemotherapy, immunotherapy, and clinical trial drugs.  This spring, his doctor recommended a stem cell transplant.  The transplant will occur this month at Vanderbilt University Medical Center.  The stem cell transplant will be the hardest thing he’s done.  Patrick will be inpatient for at least two weeks and will have a very long recovery journey ahead.

These shirts are intended to show Patrick our support for him.  We know he will beat this terrible disease and will come out the other side of this transplant stronger than ever. Even better, these shirts will support the Amyloidosis Foundation.  The Amyloidosis Foundation supports patients and families while promoting research, education, and awareness.

https://www.caringbridge.org/visit/patrickostrowski

http://amyloidosis.org/