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September 23, 2018

Upstate NY Amyloidosis Support Group To Meet May 17


OSWEGO, NY – The next meeting of the Upstate New York Amyloidosis Support Group will be held on May 17 at Rochester General Hospital/Weiner Conference Room.

Rochester General Hospital is located at 1425 Portland Ave., Rochester.

The meeting will run from 9 a.m. – 3 p.m. with guest speaker Dr. Anne Renteria/Hematologist from Boston Medical Center/amyloid clinic.

Patients, caregivers, family and interested medical personnel are welcome.

A complimentary light breakfast and lunch will be provided.

RSVPs appreciated. For information, contact MaryAnn Kraft: [email protected] 585-334-7501 or Muriel Finkel: [email protected] toll free: 866-404-7539.

Amyloidosis (AMY- la-doe-sis) is a relatively rare life-threatening blood disease.

It develops when protein called amyloid builds up in your organs, including your heart, liver, kidneys, spleen, digestive tract and nervous system. It can lead to organ failure.

The Amyloidosis Support Group is a non-profit which hosts support group meetings in 21 major cites.

Finkel is the president of the ASG national organization.

“It is through her charity that the meetings are made possible,” said MaryAnn Kraft, of Rochester. “Amyloidosis 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!”

Kraft is the Upstate NY co-facilitator for the Amyloidosis Support Groups.

The bone marrow is where the abnormal protein (antibodies) develop and travel through the blood stream to the organs and soft tissues, Kraft said, adding, “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.”

Cardiac and or renal failure is often the outcome.

Early detection is vital for possible treatment options.

Treatment depends on the type of amyloid protein, where it’s deposited and how it affects your organs and tissues.

“Full access to information is important for patients to make informed choices. Support group meetings are useful for educational purposes,” Kraft said. “Support groups have the important mission of letting patients and families know they are not alone.”

Amyloidosis Support Groups 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. See www.amyloidosissupport.com for listings of all meetings.

ASG also provides an on-line support group (www.amyloidosisonline.com).

Upstate New York meetings are held in Rochester twice a year.

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