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All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.

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About

 

What is Amyloidosis?

Amyloidosis is a disease that occurs when substances called amyloid proteins build up in your organs. Amyloid is an abnormal protein usually produced by cells in your bone marrow that can be deposited in any tissue or organ. Amyloidosis is rare, and the exact cause is often unknown. Treatments are available to help you manage your symptoms of amyloidosis

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Forum

What do you like to do to occupy your time with?

Started by Ben Munoz in General Discussions. Last reply by windsor yesterday. 11 Replies

For those of you who aren't able to work any more. What do you like to do to fill your time? If you do crafts, what kind of a craft do you do?I'm hoping all of us can share our ideas to help others (including myself) come up with new things that we…Continue

What type of music comforts you?

Started by Armando Abrero in General Discussions. Last reply by Chris on Tuesday. 6 Replies

Of course, there is no right or wrong answer. What type, brand, era, genre of music do you listen to when you're looking for comfort?Continue

Excellent Resources for Amyloidosis Patients

Started by dancermom in General Discussions. Last reply by Louisa Marion's Daugher on Tuesday. 2 Replies

If you need information, I recommend this wonderful group of sites for amyloidosis patients:Amyloidosis Support Groups Inc. www.amyloidosissupport.orgToll Free Hot/Help…Continue

New Partner - The Social Security Law Group

Started by Louisa Marion's Daugher in General Discussions. Last reply by windsor on Sunday. 6 Replies

 For any of our Members that are having difficulty applying for Social Security Disability, we have a new Partner that can assist you!  The link is under Partners on the Main Page on the bottom right side. (…Continue

Latest Activity


Moderator
Scott Orn left a comment for Jan
"Great to have you Jan! Big welcome!"
6 hours ago
Jan is now a member of Amyloidosis Support Network - Online Support Group
6 hours ago
Joanie replied to Kay heaton's discussion My Amy is in the kidneys,skin,heart, tongue. in the group Primary Amyloidosis (AL)
"As I am reading this, I am on my way home from Mayo Clinic where I had my second visit for…"
7 hours ago
Profile IconJoanie, Scott Orn and Kay heaton joined Louisa Marion's Daugher's group
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Primary Amyloidosis (AL)

Primary amyloidosis is an acquired plasma cell disorder in which a monoclonal immunoglobulin light…See More
7 hours ago

Moderator
Louisa Marion's Daugher left a comment for Sunny
"Welcome to the Amyloidosis Support Network, Sunny!  My Mom passed away 20 years ago due to…"
16 hours ago

Moderator
Scott Orn replied to Kay heaton's discussion My Amy is in the kidneys,skin,heart, tongue. in the group Primary Amyloidosis (AL)
"thanks so much for sharing. helps everyone."
16 hours ago

Moderator
Scott Orn liked Kay heaton's discussion My Amy is in the kidneys,skin,heart, tongue.
16 hours ago
Indians fan posted a status
"Been prescribed Opium to try and help the diareah. Found out it would cost $700. per month! Anyone had any experience with this drug?"
19 hours ago

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    Please click on FIRST TIME USERS and WELCOME! tabs for helpful info, also the Help tab for Links . THANKS!

    Best of Ben's Friends

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    Bens Friends Blog

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    Blog Posts

    Preparing For An Appointment With A New Doctor

    Posted by Ben Munoz on April 27, 2013 at 6:45pm 0 Comments

    Finding a new doctor can be difficult, and very scary.  Being prepared can make the whole experience much easier on you, and on the new doctor.  Remember that the doctor works for YOU, and if you are…

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    April 2013 Community Newsletter

    Posted by Ben Munoz on April 25, 2013 at 8:30am 0 Comments

    Dear Amyloidosis Family and Friends,

    Our prayers go to those affected by the Boston Marathon bombing. We also hope that none of our members were directly affected by it in any way.

    Those who have listened to Scott’s …

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    Ben's Friends Co-Founder Scott Orn Featured on Thoughtbot Podcast

    Posted by Armando Abrero on April 21, 2013 at 11:00am 0 Comments

    After being featured on a number of publications,…

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    Baylor College of Medicine Article Featured Ben's Friends

    Posted by Armando Abrero on April 17, 2013 at 10:30am 0 Comments

    Coping with a rare condition stretches our resiliency and, with a little help from friends, triumph through adversity.

    The story of…

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    Best of Ben's Friends is a collection of inspirational or informative posts from across our family of patient communities. To nominate a post, discussion, photo, or video, email the link to info@bensfriends.org.

     

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