OSWEGO, NY – The next meeting of the Upstate New York Amyloidosis Support Group will be held in the Weiner Conference room at Rochester General Hospital, 1425 Portland Ave., Rochester, from 9 a.m. to 3 p.m. on April 20.
The guest speaker will be Dr. Taimur Sher – Hematologist – Mayo Clinic/Jacksonville,Fla.
Patients, caregivers and interested medical personnel are welcome.
A complimentary light breakfast and lunch will be provided.
RSVPs appreciated. For information, contact MaryAnn Kraft: email@example.com 585-334-7501 or Muriel Finkel: Muriel@finkelsupply.com toll free: 866-404-7539.
Amyloidosis (AMY- la-doe-sis) is a relatively rare 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.
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.
Cardiac and or renal failure is often the outcome.
The bone marrow is where the abnormal protein (antibodies) develop and travel through the blood stream to the organs and soft tissues, she 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.”
Early detection is vital for possible treatment options.
Without proper diagnosis, typing and treatment, the organs can stop working and the patient can die, she pointed out.
Her husband, Dave is a former resident of Phoenix, NY. He has primary amyloidosis with renal failure.
In 2005 he was “a seemingly healthy, active working 59-year-old. Than my diagnosis was confirmed and I am still fighting the battle,” he told Oswego County Today. “Amyloidosis – enter the realm of rare diseases.”
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.
“Dave is admirable; fighting for his life and never complains despite getting some awful surprise punches,” MaryAnn said. “His stem cell transplant in 2005 resulted in a partial good response even though it took a year to recover from that.”
His kidneys continued to worsen though. In 2009, he endured weekly IV chemo/steroid combination for 13 months, again he fought not only the amyloidosis symptoms but the onslaught of side effects of chemo as severe GI disturbances, extreme fatigue and circulatory complications resulting in another partial good response.
“Amyloidosis is a dragon with many heads, all spewing fire,” MaryAnn said. “Dave’s kidneys did succumb to the beast though in 2011 and he has been on peritoneal dialysis for two years.”
He was cleared for kidney transplant listing, which is generally four-year wait for a cadaver donation. Family and Friend Living donor matches were not promising.
Than hope arose when his very good friend was found to be compatible for transplant.
“Andy was glad to be approved and anxious to donate. In their college days, Andy, Dave and Monroe were all buddies. Oddly, Monroe was diagnosed with the same type of amyloidosis, the same year as Dave, but he had been prior misdiagnosed as having kidney stones for a year,” MaryAnn said.
When the truth was discovered, Andy wanted to give his kidney to save Monroe’s life. But it was too late.
The disease was too far progressed and Monroe passed three months after getting the correct diagnosis, MaryAnn said.
“When Andy heard of our appeal for a living donor he stepped up in hopes of saving Dave from the same demise,” she said.
As they proceed to prepare for transplant, it was noted that Dave’s PSA was elevated and had been since 2007 without change and the test called Free PSA, which gives a percentage of risk of cancer, reflected a low risk of 12-15%.
The biopsy still had to be done because anti-rejection drugs post transplant could accelerate any pre-existing cancers.
“Need I say more – another punch. The biopsy came back positive, very small and the type men can grow old with, but made him ineligible for transplant,” she said. “We’re told that even with prostate treatment, the wait is five years post treatment. So here we wait in limbo, confused and frustrated. We are heading to the amyloidosis clinic in Boston to try and get some direction and to see if there is any path to transplant sooner than later.”
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 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 twice a year.
“Patients and their caregivers/family will travel a good distance to attend these meetings,” Kraft said. “Patients need to know they are not alone!”