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Familial Amyloidosis
- By bellographix · Posted November 7, 2009
- Discussion in Familial (hereditary) and TTR amyloidosis · 4 replies
- Hello all, my father past away in 2004 from Amyloidosis and I wanted to know what I should do to either test to see if I or my sister inherit this? Any suggestions? Thank you ...
fed up!
- By ready4glory · Posted November 3, 2009
- Journal · 4 replies
- I was DX over a year ago with Amyloid I have been to Boston three times. Finally on the last visit they said my AMyloid was secondary but they couldn't figure out secondary to what! Neither could my doctors ...
Recurrent fevers and amyloidosis
- By TomT · Posted October 31, 2009
- Discussion in Primary amyloidosis (AL) · 10 replies
- I was diagnosed with amyloidosis and multiple myeloma in February of 2008. I receive care from Mayo Clinic in Jacksonville Forida. I have been on a three drug treatment that has been very efffective in ...
Inspire members featured
- By Brian · Posted October 28, 2009
- Journal · 29 replies
- Today Massachusetts General Hospital's Proto Magazine published a wonderful profile of nine Inspire members. Each of these stories underscores what we all know to be true -- that Inspire is a special ...
Your vote helps to raise money for research!
- By T-Gayle · Posted October 3, 2009
- Journal · 0 replies
- Hello all ~ As a Al Amyloidosis patient, I am trying to raise money to donate for research. I am only asking for your VOTE in order to win. I have entered my handsome French Bulldog in the www.cutestdogcontest.com ...
Amyloidosis Support Groups and Blood Diseases
- By Muriel · Posted September 29, 2009
- Journal · 0 replies
- www.mayoclinic.org/blood-patient-worksho p The second Living with a Blood Disease Symposium: A Comprehensive Workshop for Patients, Family and Friends Mayo Clinic Rochester, Minnesota May 8-9, 2010 Symposium ...
Winning a battle,still fighting the war
- By Constantvigil · Posted September 17, 2009
- Discussion in Primary amyloidosis (AL) · 0 replies
- My 72-year old wife was diagnosed with Primary amyloidosis 3 years ago and given 6 months to live. She's still fighting it but the doctor has stopped the chemo (melphalan) for several months because her ...
Itching associated with Primary Amyloidosis
- By Constantvigil · Posted September 12, 2009
- Discussion in Primary amyloidosis (AL) · 3 replies
- My wife was diagnosed with Primary amyloidosis three years ago. Melphalan has brought her Lambda count down to the normal range so she's been taken off it. However, she has intense itching, especially ...
Meds for ATTR
- By kennethpletz · Posted September 3, 2009
- Discussion in Familial (hereditary) and TTR amyloidosis · 6 replies
- Saw the hematologist today and she confirmed it is indeed familial amyloidosis. They sent off blood for dna sampling to determine which strain it is. In the interim, she prescribed Dolobid (Diflunisal ...
Amyloidosis Support Groups Inc. - "Happenings"
- By Muriel · Posted August 20, 2009
- Journal · 2 replies
- AUGUST 23 - POP'S RUN-FUNDRAISER - www.popsrun.org 29 - ROCHESTER NEW YORK – DR. SUZANNE HAYMAN/MAYO - NOTE CHANGE IN VENUE SEPTEMBER 5 – LABOR DAY WEEKEND 11 – David Jamieson Memorial Fundraiser - Hillview ...
5 minutes on the lysosome. Because it's time we know.
- By StephLynStill · Posted August 13, 2009
- Journal · 0 replies
- So did you ever wonder what happens to the tadpole's tail? Does it just fall off? No actually. Lysosomes eat it. (autophagy: the cell's ability to eat itself...) And the webbing in our fingers and toes ...
Scheduled maintenance this evening
- By TeamInspire · Posted August 10, 2009
- Journal · 13 replies
- All, Inspire will be performing database updates this evening starting at 8:00 Eastern. We expect the updates to take no more than 2 hours and the site will be unavailable at this time. We thank you for ...
my daughter and husband
- By 5cats · Posted August 7, 2009
- Journal · 17 replies
- my husband's father died in his sixties undiagnosed from a mysterious condition in the 1960's. at age 27, my husband had strange symptoms which took 2 1/2 years to diagnose- confirmed as amyloidosis and ...
Familial Amyloidosis Polyneuropathy
- By joan45 · Posted August 3, 2009
- Discussion in Familial (hereditary) and TTR amyloidosis · 1 reply
- Info to both Ron C and Ken regarding your journies. My husband has FAP (see above) and his 4 year episode with this disease is almost unbelievable and much like Kens. Took about 3 1/2 years to finally ...
Familial Amyloidosis and Neuropathy
- By kennethpletz · Posted August 2, 2009
- Discussion in Familial (hereditary) and TTR amyloidosis · 2 replies
- I haven’t really seen much mention of familial amyloidosis and neuropathy mentioned. I have severe neuropathy – went from cane to walker to now a wheelchair. My legs are so weak and they feel like tree ...
Lysosomal Disease and Alzheimer's
- By StephLynStill · Posted July 27, 2009
- Journal · 0 replies
- Hi, Here is another little boy affected with Lysosomal Disease, Dillon. The correlations between Lysosomal Disease and much more well-known issues like Alzheimer's are being uncovered every day. With ...
The 2 fronts of amyloidosis
- By apr · Posted July 26, 2009
- Discussion in Primary amyloidosis (AL) · 2 replies
- Our Mayo Dr. explained that amyloidosis attacks on 2 fronts--organs and blood. Does anyone know more about this???? My husband 's bloodwork is still ok, but we are afraid his organ involvement is growing ...
Amyloidosis Support Groups - BLOOD DISEASE SYMPOSIUM
- By Muriel · Posted July 25, 2009
- Journal · 0 replies
- Second Living with a Blood Disease Patient Conference in Rochester, MN on May 8-10, 2010. Our meeting last year was a spectacular success with almost 400 participants. Realize it is Mothers Day on May ...
Enlarged tongue w/ridges for over 8 months
HIDS
- By mommymanda · Posted July 12, 2009
- Journal · 8 replies
- Payton is now almost 4 and it seems like he just keeps getting new symptoms. It feels as if he never gets a break! As of right now we are on Kineret injections during episodes for 3 days and also on Humira ...
