Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Discussion topics
Primary amyloidosis (AL)
Information and support for those with primary amyloidosis.
The 2 fronts of amyloidosis
- By apr · New reply November 11, 2009
- 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 ...
All 10 discussions...
Secondary amyloidosis (AA)
Information and support for those with secondary amyloidosis.
Familial (hereditary) and TTR amyloidosis
Information and support for those with familial (hereditary) and TTR amyloidosis.
Familial Amyloidosis
- By bellographix · New reply November 12, 2009
- 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 ...
All 5 discussions...
Cardiac amyloidosis associated with wild type TTR / isoleucine 122 variant
Information and support for those with cardiac amyloidosis associated with wild type TTR and the isoleucine 122 variant. 4-5 percent African Americans are said to have this variant which appears to manifest around the age 60 in the heart and is often misdiagnosed as CHF, high blood pressure or other more common heart ailments.
Localized amyloidosis, CAA, cutaneous amyloidosis, and others
Information and support for those with other types of amyloidosis.
Amyloidosis in the Lungs
- By styxx18 · New reply July 28, 2009
- 19 replies
- Hi i'm a new member my name is Stacy and unfortunately my mom has localized amyloidosis in the lungs. I'm trying to find out if anyone out there has the same diagnosis. She has a really bad cough to the ...
All discussions...
Treatment options
Discuss treatments that you have used and your experiences with them.
Amyloid Question regarding symptoms
- By sg725 · New reply April 10, 2009
- 5 replies
- I am a military service member who in the past have had a byopsy finding amyloids in my kidney. Aside from that and suffering from severe bleeding in my kidneys when they act up, is this a good indicator ...
All discussions...
Treatment centers, health insurance and financial issues
Share tips and ask questions about finding health care providers, health insurance and other financial issues.
Amyloidosis/Cardiac
- By Jennie60 · New reply May 12, 2009
- 3 replies
- Is there anyone who has information on Amyloidosis and treatment at Emory ??? Do you know someone who was treated there??? Dr.'s name??? Thanks in advance ...
All 2 discussions...
Awareness and fundraising
Discuss upcoming advocacy and fundraising events and share ideas for increasing amyloidosis awareness.
Amyloidosis
- By Lisa-Marie · New reply November 18, 2008
- 1 reply
- Hi everyone! I am intrested in raising awareness and starting a fundraiser for Amyloidosis if anyone can help in any way with ideas or advice I would greatly appreciate it! Thank You, Lisa-Marie ...
All 2 discussions...
Amyloidosis in the news and new clinical trials
Share news about amyloidosis treatment and research.
Support group meetings and online support
Share links and Web sites to help others learn more about support groups.
Amyloidosis Support Groups Inc.
- By Muriel · Posted June 8, 2008
- 0 replies
- We had an amazing meeting yesterday with Dr. Maria Picken. We lucked out with weather and over 25 shared, learned, supported and ate (food is strength:=). For more information please see www.amyloidosissupport.com ...
All discussions...
Help desk
Have a question about using the site? An idea for making it better? Post here and let us know how we can help.
Enlarged tongue w/ridges for over 8 months
- By a1d1ac1 · New reply November 1, 2009
- 12 replies
- I have had a severely swollen tongue with ridges for over 8 months now. Fat pad aspiration test-negative, tongue biopsy-negative. The docs keep telling me that my tongue is normal and not swollen. One ...
