OSWEGO, NY – The next meeting of the Upstate New York Amyloidosis Support Group will be held in Rochester General Hospital’s TWIG Lecture Hall (note change in meeting room), 1425 Portland Ave., Rochester, from 9 a.m. to 3 p.m. on Sept. 17.
RSVP requested; for more information, contact Maryann Kraft at [email protected] or 585-334-7501 or Muriel Finkel at [email protected] or 866-404-7539 (toll free).
Amyloidosis is a relatively rare blood disease that develops when protein called amyloid builds up in your organs, including your heart, liver, kidneys, spleen, digestive tract and nervous system. Without proper diagnosis, typing and treatment, the organs can stop working and the patient can die.
Treatment depends on the type of amyloid protein, where it’s deposited and how it affects your organs and tissues.
Most practicing physicians are not aware or do not have the proper training with amyloidosis, and often misdiagnose the symptoms as they mimic so many of the more common diseases. Shortness of breath and fatigue, peripheral neuropathy, as well as edema, are among the more common symptoms striking the patient whose average age is 40-60.
“There is no one picture of amyloidosis as it can affect any organ or soft tissue. Symptoms therefore can imitate so many other illnesses. That is why this disease often goes misdiagnosed or undiagnosed! Cardiac and or renal failure is often the outcome,” Kraft noted. “The bone marrow is where the abnormal protein (antibodies) develop and travel through the blood stream to the organs and soft tissues. The hereditary form is quite interesting as it can be traced back for generations, with the liver being the center of the problem with neurological symptoms associated along with the heart and kidney involvement.”
Full access to information is important for patients to make informed choices. Support group meetings are useful for educational purposes.
Support groups have the important mission of letting patients and families know they are not alone. They surround patients and families with love and attention, and give of their experience and wisdom.
Amyloidosis Support Groups (ASG) is a national non-profit organization dedicated to providing peer group support and education to patients, caregivers, families and friends of those touched by this life threatening disease.
Meetings are held in 23 major cities.
See www.amyloidosissupport.com for listings of all meetings.
ASG also provides an on-line support group (www.amyloidosisonline.com) with more than 1,050 member families and a 24/7 toll free “Hot/Help Line” to answer all support inquires.
Upstate New York meetings are held in Rochester.
Guest speakers at the September meeting will be Jeffrey Zonder, MD, Associate Professor of Medicine at Wayne State University School of Medicine (Department of Internal Medicine – Division of Hematology/Oncology) and Barbara Ann Karmanos, of the Cancer Institute.
Patients, caregivers, families members and interested medical personnel are welcome.
A complimentary light breakfast and lunch will be provided.
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What a great explanation of this mysterious disease! You do a great service to both the medical community and the public in providing this information . Awareness of uncommon diseases like amyloidosis will lead to effective and timely treatment and hopefully one day a cure.