Rare Disease

My husband was misdiagnosed and treated with the wrong medication for over 3 years.  On February 9th 2015 he was hospitalized for 20 days and it was discovered he has Amyloidosis.   (Amyloidosis is a rare disease that results from accumulation of inappropriately folded proteins. These misfolded proteins are called Amyloids. When proteins that are normally soluble in water fold to become amyloids, they become insoluble and deposit in organs or tissue, disrupting normal function. wikipedia)   This disease attacks the vital organs and is extremely aggressive.  He lost valuable time by being treated with medication for a disorder he did not  have.  In 30 days’ time he lost 80% of his kidney function. His nephrologist (kidney doctor) basically walked away from the situation stating there was nothing they could do for him,  leaving me to research and find the care that he needed.  I found an oncologist and he is currently undergoing chemo therapy to attempt remission.   For more information on this aggressive disease please visit the Amyloidosis Foundation  at www.amyloidosis.org.   We are not affiliated with this organization in anyway, but I wanted to give them recognition because this was the only place I could get any information about what was wrong with my husband, because the doctor's at the hospital had nothing to offer.  Seeking funds to pay medical bills and for Awareness of this deadly disease- With a grateful heart