Amyloidosis Support Group
Primary amyloidosis occurs when the body's antibody-producing cells do not function properly and produce abnormal protein fibers made of antibody fragments. Some people with primary amyloidosis have a condition called multiple myeloma. The antibody fragments come together to form amyloid deposits in different organs, including the kidneys, where they cause serious damage.
My mom passed away from this disease in May of this year. We live in a rural area and it took the doctors a full year to figure out what was wrong with her. During that time the amyloid did all kind of damage building up in her organs. I cant tell you of the times doctors accused her of imagining her symptoms and sent her home. This disease from what I have learned is seldomly tested for and I would like to know how many people out there have run into this same kind of problems? I want to do something to help make doctors be more aware of this disease and test for it sooner so no one else has to die from it like my mom did because the doctors simply didnt test for it until it was too late. thanks for letting me vent.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
Amyloidosis is considered rare but like you said doctors are not looking for it! Diagnosis requires the congo red staining of a tissue biopsy, so if amyloidosis is not being considered the proper biopsy and staining will not be done.
The Amyloidosis Support Group (ASG) holds meetings in over 20 major cites in the US. This is an informational/support group. Pamphlets are available to you to pass out to doctors and distribute as you feel appropriate. Please go to our website at www.amyloidosissupport.com and look at left column for awareness items. We also have a cd that can be given to MD's. You can watch it on the website... look in upper right hand corner for "animation".
If you would like to attend a meeting you can find the locations and times listed on the left hand side of the Home page.
My sincere condolences. Thank you for wanting to continue to fight for awareness of amyloidosis.