My mom, aunt and grandmother all died of Hereditary Amyloidosis. I was about 10 years old when I was first exposed to the devastating effects of the disease and it lived with my family and I until I was 17. Time passed after my mom died and at the age of 26, I started to experience some numbing sensations in my arm and hands. I am an artist and I play guitar, so ordinarily I’d suspect these to be the cause. However, I knew that one of the symptoms of Amyloidosis was carpal tunnel syndrome and that my mom also had issues with her hands before she got sick.

In 2006, I went in for my genetic testing and six weeks later, I received the call from Dr. Skinner, the Director of the Boston Amyloid Treatment & Research Program at the time, who confirmed my suspicions that I carried the TTR gene. A year later, I went in for my fat pad biopsy and was officially diagnosed with Hereditary Amyloidosis after protein deposits were discovered in my tissue.

more

In July of 2013, I was diagnosed by a kidney biopsy. I had gone to the doctor with just one symptom of swollen ankles. I have AL Amyloidosis and we believe the only place I have it is in my kidneys. I work with a local oncologist in Pleasant Hill, CA, and he consults with the Amyloid team at Stanford. In August of 2013, I began treatment with CyBorD. After two months, the Cytoxan was replaced with Revlimid because the response with Cytoxan was not as fast as they would have liked. My bone marrow biopsy in April of 2014 still showed a higher than normal level of plasma cells, so we began discussing other options.

more

There is no greater reminder that we should cherish moments than nearly dying. A close call with death ensures that we become much more aware of what we have, what we need, and what we might miss. We were extremely aware this past July, that this year marked 20 years since we wallowed in fear, self pity and continual illness. Lou was a married 42-year-old healthy father of 3, with a house, a couple of cars, and a great job. And then, he was sick. It just wasn’t the way it was supposed to be.

more

I live in Los Angeles in California but, as a performer, have had the good fortune to travel and work internationally for the past 50 or so years.

My amyloidosis announced its unwelcome arrival around 2008, if not a little before, when I was in my late 60s, with the manifestation of persistent dark circles around my eyes. When these worsened, with the deep shadows taking on a purple hue, a hospital checkup concluded that I was suffering from multiple myeloma with an amyloidosis association.

Having practiced homeopathic and naturopathic medicine for most of my adult life, my first instinct was to treat this condition by the same means. Initially I had some success, delaying the onset of more severe symptoms. But these inexorably arrived and eventually I was persuaded to undergo chemotherapy at a local hospital in Los Angeles. Put on a regime of Revlimid and Dexamethasone, with occasional doses of Velcade, I began to feel extremely unwell, and was forced to restrict activities. My professional career was slowly put on hold, apart from the occasional recording and recital where my voice showed relentless signs of deterioration. Dark glasses concealed my signature “raccoon eyes” whenever I was out in public, these occasions becoming less and less frequent.

Pat, my wonderfully supportive wife, was indefatigable in trying to ensure that the treatment I was being given was, in fact, in my best interest. She researched online and never stopped questioning, becoming especially concerned when there was little sign of improvement. Eventually, her due diligence was rewarded with an extraordinary stroke of good fortune when she was put in touch with Dr. Robert Kyle of the Mayo Clinic in Minnesota. Dr. Kyle is a legendary pioneer in the field of hematology, heaped with international honors, and still adding his wisdom and kudos to medical conferences worldwide. He and Pat talked by phone and corresponded by email. After having requested her to send him records of my blood and urine tests, Dr. Kyle declared I was not suffering from multiple myeloma, but from amyloidosis of the dominant AL variety. He invited me to come to the Mayo for a thorough check-up, at which his diagnosis of AL amyloidosis was confirmed.

more