Dear Family and Friends,
Welcome to our CaringBridge site. I am sharing this information in hope that everyone will have a better understanding of the disease that Carl is fighting at this time. There seems to be some misunderstanding, Carl has not been diagnosed with cancer. He has Amyloidosis which is something we had never heard of and many of you may not be familiar with it and its characteristics.
I can't answer a lot of questions about the disease itself but I will do all I can to help keep you updated on his progress. I apologize for not being able to answer or respond to every phone call or text that is left but know that we truly appreciate all of your prayers, support, words of hope and encouragement.
Please feel free to leave messages on the site and I can share them periodically with Carl..I am sure they will lift his spirits
Add this site to your favorites so that you will be able access quickly and I will do my best to keep it updated. Entries may not be made daily but if there is a major change I will definitely add it to this site.
Thanks again for all your support and love.....
AMYLOIDOSIS is a rare disease that is a consequence of abnormal protein (amyloid) deposits in body tissues and organs.
Amyloidosis can occur as an isolated disease or as a result of another illness.
Symptoms in patients with amyloidosis result from abnormal functioning of the particular organs affected.
Diagnosis of amyloidosis is made with a biopsy of involved tissue.
Treatment options for amyloidosis depend on the type of amyloidosis and involve correcting organ failure and treating any underlying conditions.
Primary amyloidosis, or AL, occurs when a specialized cell in the bone marrow (plasma cell) spontaneously overproduces a particular protein portion of an antibody called the light chain. (This is why it is coded as AL.) The deposits in the tissues of people with primary amyloidosis are AL proteins. Primary amyloidosis can occur with a bone marrow cancer (http://www.medicinenet.com/cancer/article.htm
) of plasma cells called multiple myeloma (http://www.medicinenet.com/multiple_myeloma/article.htm
) (fewer than 20% of AL patients). Primary amyloid is not associated with any other diseases but is a disease entity of its own, conventionally requiring chemotherapy (http://www.medicinenet.com/chemotherapy/article.htm
) treatment. Researchers at the Mayo Clinic in Rochester, Minn., and Boston University in Boston, Mass., have demonstrated the benefits of stem-cell transplantation for primary amyloidosis. In stem-cell transplantation, the patients' own stem cells (http://www.medicinenet.com/stem_cells/article.htm
) are harvested to treat primary amyloidosis by replacing abnormal plasma cells in the bone marrow.What causes amyloidosis?
Amyloidosis is caused by changes in proteins that make them insoluble, leading them to deposit in organs and tissues. These amyloid proteins accumulate mainly in the tissue space between cells. Changes in proteins that make them amyloid proteins occur because of gene mutations.
What are risk factors for amyloidosis?
Risk factors for the inherited forms of amyloidosis are being genetically related to an ancestor with the disease. The risk factors for secondary amyloidosis are the underlying inflammatory chronic medical conditions.
Age is a risk factor for amyloidosis, as well, as most people who develop amyloidosis are over 60 years old.
What are amyloidosis symptoms and signs?
Readers Comments 20 (http://www.medicinenet.com/script/main/art.asp?articlekey=269&questionid=743
Share Your Story (http://www.medicinenet.com/script/main/submit-patient-comments.asp?questionid=743
Symptoms in patients with amyloidosis result from abnormal functioning of the particular organs involved. There might be no symptoms until the disease is relatively advanced. The heart, kidneys, liver, bowels, skin, nerves, joints, and lungs can be affected. As a result, symptoms and signs are vague and can include fatigue (http://www.medicinenet.com/fatigue/article.htm
), shortness of breath (http://www.medicinenet.com/shortness_of_breath/symptoms.htm
), weight loss (http://www.medicinenet.com/weight_loss/article.htm
), lack of appetite, numbness, tingling, carpal tunnel syndrome (http://www.medicinenet.com/carpal_tunnel_syndrome/article.htm
), hearing loss (http://www.medicinenet.com/deafness/article.htm
), enlarged tongue, bruising, and swelling of hands and feet (http://www.medicinenet.com/feet_facts_quiz/quiz.htm
). Amyloidosis in these organs leads to cardiomyopathy (http://www.medicinenet.com/cardiomyopathy_hypertrophic/article.htm
), heart failure (http://www.medicinenet.com/heart_failure/article.htm
), peripheral neuropathy (http://www.medicinenet.com/peripheral_neuropathy/article.htm
), arthritis (http://www.medicinenet.com/arthritis/article.htm
), malabsorption, diarrhea (http://www.medicinenet.com/diarrhea/article.htm
), and liver damage and failure. Amyloidosis affecting the kidney leads to "nephrotic syndrome," which is characterized by severe loss of protein in the urine (http://www.medicinenet.com/proteinuria_protein_in_the_urine/symptoms.htm
) and swelling of the extremities.