dezwitinc
Senior Member
- Location
- Delray Beach, FL
The reason for this post is to help raise awareness about an insidious disease with which I have become intimately acquainted.
The name of this disease is Amyloidosis and it strikes about 2,000 people per year in the United States so it falls into the rare disease category.
Currently there is no cure, only treatment to try and send it into remission.
AL amyloidosis is a hematological disorder, associated with plasma cell dyscrasia that means an abnormal condition of blood cells [from Greek dyskrasia, literally "bad mixture,"], in which extra-cellular insoluble protein (amyloid) fibrils accumulate in various tissues and organs throughout the body. These amyloid fibrils, formed by an errant (monoclonal) group of plasma cells in the bone marrow, consist of abnormal immunoglobulin (Ig) light chain proteins (M proteins). Except for those within the central nervous system, amyloid fibrils can affect any major organ in the body. The most common organs affected are the kidney, heart, liver, and autonomic or peripheral nerves.
The problem with this disease is that due to lack of awareness on the part of the medical community and the public, it more often than not goes undiagnosed until it is too late to provide adequate treatment for the patient.
Symptoms of this disease may include carpal tunnel syndrome, shortness of breath, digestive problems, and kidney problems as well as weight and muscle loss due to malabsorption of food.
It is a disease that will sneak up on you with devastating consequences due to the high mortality rate associated with it.
Because it is so rare, it does not garner much attention because there aren't enough votes associated with it to garner political support.
Please visit the following websites, become informed and support the effort to find a cure.
http://www.amyloidosissupport.com/
http://www.igive.com/welcome/warmwelcome.cfm?c=35202 (Use this site to do your internet shopping and the 700+ merchants will donate money).
http://www.amyloidosis.org/default.asp
http://www.bu.edu/amyloid/about/what/index.html
Thank you,
DEZ
The name of this disease is Amyloidosis and it strikes about 2,000 people per year in the United States so it falls into the rare disease category.
Currently there is no cure, only treatment to try and send it into remission.
AL amyloidosis is a hematological disorder, associated with plasma cell dyscrasia that means an abnormal condition of blood cells [from Greek dyskrasia, literally "bad mixture,"], in which extra-cellular insoluble protein (amyloid) fibrils accumulate in various tissues and organs throughout the body. These amyloid fibrils, formed by an errant (monoclonal) group of plasma cells in the bone marrow, consist of abnormal immunoglobulin (Ig) light chain proteins (M proteins). Except for those within the central nervous system, amyloid fibrils can affect any major organ in the body. The most common organs affected are the kidney, heart, liver, and autonomic or peripheral nerves.
The problem with this disease is that due to lack of awareness on the part of the medical community and the public, it more often than not goes undiagnosed until it is too late to provide adequate treatment for the patient.
Symptoms of this disease may include carpal tunnel syndrome, shortness of breath, digestive problems, and kidney problems as well as weight and muscle loss due to malabsorption of food.
It is a disease that will sneak up on you with devastating consequences due to the high mortality rate associated with it.
Because it is so rare, it does not garner much attention because there aren't enough votes associated with it to garner political support.
Please visit the following websites, become informed and support the effort to find a cure.
http://www.amyloidosissupport.com/
http://www.igive.com/welcome/warmwelcome.cfm?c=35202 (Use this site to do your internet shopping and the 700+ merchants will donate money).
http://www.amyloidosis.org/default.asp
http://www.bu.edu/amyloid/about/what/index.html
Thank you,
DEZ
