What is Amyloidosis
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 primar...
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Saturday August 30, 2008
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MarieJeanne Jul 02, 2008
Wednesday, July 2, 2008 |
Decided to go to Mayo Clinic in Arizona two months ago for an evaluation of treatment that my Hematologist was recommending for the amyolid. I really glad I did, after a myriad of tests and with a consultation with the head of the department, it was decided that my physician was recommending the latest treatment for amyloid.
1 Recommendation -
Amyloidosis Support Groups (ASG) hold meetings thr...
thumbelina Jun 21, 2008
Saturday, June 21, 2008 |
Amyloidosis Support Groups (ASG) hold meetings throughout the US. Our Website is: www.amyloidosissupport.com. There you will find info on All the ASG meetings held in the US and also amyloidosis links outside of the US. We also have an on line support group through the Yahoo groups...see link below.
I am helping maintain the meetings held in UPstate NY as a co-facilitator with Mu...1 Recommendation -
March 17th and our next Upstate NY support group m...
thumbelina Mar 17, 2008
Support is growing at the Amyloidosis Support Group Meetings
Monday, March 17, 2008 |
March 17th and our next Upstate NY support group meeting is drawing near! April 26th we will meet again with a prominent guest speaker...Dr. Sukru Emre Director of Organ Transplantation and Immunology at Yale School of Medicine.
See website: www.amyloidosissupport.com for list of meetings and locations, info on available financial assistance, survivor stories, Fund Rai...1 Recommendation -
I will get through this.Things will get bette...
brendelwa Jan 25, 2008
Journal Entry for January 25, 2008
Friday, January 25, 2008
I will get through this.
Things will get better.
I will be happy again.
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Thank you for this opportunity to raise awareness ...
thumbelina Oct 28, 2007
Journal Entry for October 28, 2007
Sunday, October 28, 2007
Thank you for this opportunity to raise awareness and support for a favorite not for profit organization. I nominate the "AMYLOIDOSIS SUPPORT GROUPS INC." (ASG)www.amyloidosissupport.com This is a national support group through the charity of Muriel Finkel, president of ASG. Amyloidosis is a life threatening disease caused by the accumulation of abnorm... -
I'm recovering slowly but shurely from the fal...
thumbelina Sep 14, 2007
Journal Entry for September 14, 2007
Friday, September 14, 2007
I'm recovering slowly but shurely from the fall last month. At least I'm not afraid to sneeze anymore....sure sign of ribs healing : ) Got myself a stationary bike, no helmet needed : )
The second Amyloidosis Support Group Meeting on August 25th went very well. The Free Lite Chain Blood test is a very promising new tool for monitoring Amy patients response to treatme... -
Getting ready for our 2nd Support group meeting on...
thumbelina Aug 16, 2007
Journal Entry for August 16, 2007
Thursday, August 16, 2007
Getting ready for our 2nd Support group meeting on August 25th. Our speaker will be Dr. Karen VanHoeven who will discuss the Free Light Chain tests and help us understand it and how it monitors patient response to treatments.
It's been a rough 3 weeks though because I took a spill off my bicycle and broke 3 ribs and craked my head open....4 stitches. So, things have bee...1 Comment -
I just need someone to talk to. I need to he...
MattyK Jun 25, 2007
Journal Entry for June 25, 2007
Monday, June 25, 2007
I just need someone to talk to. I need to hear from a person with this disease. I'm feeling depressed, anger and more depression. The MM has added amyloidosis to my heart. I have two young boys who I want to see graduate.1 Comment -
June 18,2007We had our FIrst Upstate NY Amyloidosi...
thumbelina Jun 18, 2007
Journal Entry for June 18, 2007
Monday, June 18, 2007
June 18,2007
We had our FIrst Upstate NY Amyloidosis Support Group Meeting here in Rochester on Saturday 6/16. Our guest was Dr. Merrill Benson www.iupui.edu/~amyloid/benson.htm from Indiana University. Dr. Benson has won International recognition for his research in Primay, Familial and Inflammatory Amyloidosis. Our group was over 30 people with attendees from Tennessee and PA a...1 Comment -
April 10th found this site with an amyloidosis pos...
thumbelina Apr 11, 2007
Journal Entry for April 11, 2007
Wednesday, April 11, 2007
April 10th found this site with an amyloidosis posting. Was surprised about that....rare (orphan disease). There is a national support group for this disease that can be found at:
www.amyloidosissupport.com Also the amyloidosis support network is very good at: www.amyloidosis.org
Wednesday, July 2, 2008 |
Decided to go to Mayo Clinic in Arizona two months ago for an evaluation of treatment that my Hematologist was recommending for the amyolid. I really glad I did, after a myriad of tests and with a consultation with the head of the department, it was decided that my physician was recommending the latest treatment for amyloid.1 Recommendation -
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