OSWEGO, NY – The Upstate NY Amyloidosis Support Group will meet in Rochester.
It will be held on May 14 from 9 a.m. – 4 p.m. at the Rochester General Hospital – Weiner Conference Room – 1425 Portland Ave., Rochester.
A complimentary lunch will be provided.
RSVP requested: MaryAnn Kraft, Upstate NY co-facilitator at 585-334-7501 or Muriel Finkel toll free 866-404-7539.
Amyloidosis is a life threatening illness caused by the production of abnormal proteins circulating in the blood and accumulating in the organs as heart and kidney and liver, leading to organ failure.
There is no cure, but with early detection, there are treatment options.
Amyloidosis is considered a “rare disease” (8 in a million).
It is under diagnosed and often misdiagnosed.
The Amyloidosis Support Group has goals to support/educate patients and families dealing with this torturous illness and also to raise awareness to the public and medical communities.
If doctors are not looking for amyloidosis they will not find it.
It needs to be a considered diagnosis, not a last resort diagnosis.
Symptoms can be similar to other illnesses.
A tissue biopsy stained with congo red is the way to identify and confirm the diagnosis.
Patients and family are willing to travel the distance to spend the day learning about this disease and the current approaches to treatment.
We have leading Amyloid physicians as our guest speakers.
In May, the guest speaker will be Dr. Raymond Comenzo, attending physician, director Blood Bank and Neely Cell
Collection Center, Tufts Medical Center.
Your support is needed and appreciated in raising awareness of this disease and the resources provided.
Patients need to know “you are not alone.”
For more information, visit www.amyloidosissupport.com