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"A wake-up call from a young e-patient: 'I need to be heard'”

John2
  • By John2 · Posted yesterday at 3:22 pm
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 4/15/14 Dear members, I am writing to share with you a new guest column in "Scope," the Stanford University School of Medicine's medical blog: "A wake-up ...

Velcade Contraindications

GaPeach
  • By GaPeach · New reply April 9, 2014
  • Discussion in Primary amyloidosis (AL) · 2 replies
  • Here are a few things that I found concerning green tea. http://www.myelomabeacon.com/news/2009/0 2/05/green-tea-blocks-effectiveness-of-v elcade-treatment/ http://bloodjournal.hematologylibrary.or g/content/113/23/5695.full ...

Apollo Study Alnylam Phase 3

Jeffkahuna
  • By Jeffkahuna · New reply April 9, 2014
  • Discussion in Familial (hereditary) and TTR amyloidosis · 27 replies
  • Well after two months of failing to qualify (low Vitamin A ,weak heart),I have finally got into the Study I received my first injection on Feb 21st It is a big deal. It takes about 5 hours to get. They ...

accidently erased a friend request

joan45
  • By joan45 · Posted April 8, 2014
  • Discussion in Familial (hereditary) and TTR amyloidosis · 0 replies
  • Someone asked me what trial my husband was on and if it was diflunisal and I was asked to be a friend and I just had surgery on my hand and pushed the wrong button that showed denial. Sorry and please ...

MM AND AL

Muriel
  • By Muriel · Posted April 2, 2014
  • Journal · 0 replies
  • http://informahealthcare.com/doi/abs/10. 3109/10428194.2014.905775?ai=2lcb4ui=gj5 vaf=T Risk Adapted Therapy for Multiple Myeloma: Back to Basics Shaji Kumar, Morie A Gertz Mayo Clinic, Hematology, 200 ...

TTR- ALNYLAM

Muriel
  • By Muriel · Posted April 2, 2014
  • Journal · 0 replies
  • Alnylam Receives Positive Opinion for Orphan Drug Designation in the European Union for ALN-TTRsc, a Subcutaneously Delivered RNAi Therapeutic for the Treatment of Transthyretin-Mediated Amyloidosis (ATTR ...

Losing too much protein

Kakki
  • By Kakki · New reply March 30, 2014
  • Discussion in Primary amyloidosis (AL) · 5 replies
  • The SCT was a success! No more amyloid production. However my husband is losing 35,00+ grams of protein every day because of his kidney failure. I know it takes a long time for the stem cells a to help ...

Patient's Day Event at International Symposium on Amyloidosis

GaPeach
  • By GaPeach · Posted March 27, 2014
  • Discussion in Support group meetings and online support · 0 replies
  • PLEASE RSVP TO isasym@iupui.edu IF YOU PLAN ON ATTENDING!!! WE MUST HAVE A HEADCOUNT FOR THIS EVENT!!!! You’re Invited! Patients Day ISA International Symposium on Amyloidosis Saturday, April 26, 2014 ...

Amyloidosis Support Group Meeting - Detroit

Muriel
  • By Muriel · Posted March 25, 2014
  • Discussion in Support group meetings and online support · 0 replies
  • Our guest this Saturday will be Dr.Morie Gertz from the Mayo Clinic in Rochester. Dr. Gertz knows all of the different types of amyloidosis and is recognized as a leader in the field of research as well ...

Finally on medication

Ironbridge
  • By Ironbridge · Posted March 22, 2014
  • Journal · 0 replies
  • My husband has now been prescribed diflunisal 250 mg twice a day - this is just over a year since identifying the TTR gene mutation. We are hopeful that this will slow the progression of the disease ...

The Inspire Q&A: Inspire talks with Don Dizon, MD

John2
  • By John2 · New reply March 19, 2014
  • Journal · 12 replies
  • The Inspire Q&A: Inspire talks with Don Dizon, MD Dear members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people who are making contributions to helping patients ...

Our second annual report with Stanford Medical School

Brian
  • By Brian · Posted March 19, 2014
  • Journal · 0 replies
  • We just finished a brand new special report, “Experts by experience 2014: A compilation of patients’ stories”, in partnership with the Stanford University School of Medicine. It is a 31-page collection ...

Hitting a milestone -- 5,000 photos posted already

John2
  • By John2 · Posted March 18, 2014
  • Journal · 0 replies
  • From: John Novack, communications director, Inspire 3/18/14 Dear members, I'm writing to let you know that in a little more than a month, members here have posted more than 5,000 photos. Congratulations ...

Recently diagnosed with AL Amyloidosis

GenXfactor
  • By GenXfactor · New reply March 16, 2014
  • Discussion in Primary amyloidosis (AL) · 3 replies
  • Looking for answers…recently diagnosed with AL amyloidosis. 43/m/Chicagoland area ...

Mayo Clinic

GenXfactor
  • By GenXfactor · Posted March 13, 2014
  • Journal · 0 replies
  • -Having biopsy on nodule in my spine on Monday 3/17 -Visiting Mayo Clinic on 3/24/2014 for a 2nd opinion ...

Repurposing Diflunisal for Familial Amyloid Polyneuropathy

GaPeach
  • By GaPeach · New reply March 8, 2014
  • Discussion in Familial (hereditary) and TTR amyloidosis · 9 replies
  • I am pleased to finally be able to report the POSITIVE RESULTS for the Diflunisal trial that was conducted at Boston University and other sites around the world. Dr. John Berk reported the findings at ...

Timing for results on a fat pad biopsy?

rebecca250
  • By rebecca250 · New reply March 5, 2014
  • Discussion in Primary amyloidosis (AL) · 12 replies
  • Well, I finally had a fat pad biopsy yesterday and I'm wondering how long it takes to know the results. Also, is it worth sending part of the sample to a specialist. If so, to whom? Mine was done at UCSD ...

The Inspire Q&A: Inspire talks with Kathy Nieder, MD

John2
  • By John2 · New reply February 23, 2014
  • Journal · 36 replies
  • The Inspire Q&A: Inspire talks with Kathy Nieder, MD By John Novack, Communications Director, Inspire Dear members, We at Inspire are pleased to bring you the latest in a series of interviews with people ...

L-Dex?

KLCoul
  • By KLCoul · New reply February 21, 2014
  • Discussion in Primary amyloidosis (AL) · 12 replies
  • Hello, I'm a 55 year old male with A.L. Amyloidosis diagnosed with the disease at age 48. I have only been a member now for just over 8 months I believe. Anyway I decided to send you my progress fighting ...

Introducing Photos for Inspire

Walter
  • By Walter · New reply February 13, 2014
  • Journal · 180 replies
  • Hello everyone, Today at Inspire we’re excited to announce the launch of a new feature, and it’s one that many of you have requested -- the ability to upload photos to Inspire. You can now add photos ...