Welcome to Amyloidosis Support Network!
Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
Amyloidosis is a disease that occurs when 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 amyloidosis symptoms.
Learn more about Amyloidosis from Amyloidosis Patient Support Community.
This site is a virtual community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.
Though we get occasional visits from medical doctors, the site is not routinely supported by medical professionals. Nobody here can diagnose you or tell you what your treatment choices “should” be. We might inform your choices by sharing individual experiences and information developed by study as lay people. Amyloidosis Support Network is not intended to replace the advice or treatment of licensed medical professionals. Readers should validate any information they take away from here, against the experience of a licensed medical doctor. Site owners and moderators are not legally responsible for the accuracy of information shared on the site.
How is Ben’s Friends Different from Social Media and Other Support Sites?
Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
We’re interested in you as a person, and in your struggles as a rare disease patient. But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe. Your information is never shared, and your activity never tracked by adware.
When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live. That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together..
Ben’s Friends: Safe and Supportive.
And anonymous to keep it that way.
Why create an account?
Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:
Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.
Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.
Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.
Click here to create an account and join.
Latest Discussions
- Amylodosis 101by ModSupport on January 20, 2023
What is Amyloidosis? The amyloidoses (the plural word for amyloidosis) are rare diseases first described over 150 years ago. There are different types of amyloidosis that are all unified by a common pathological process. Amyloid diseases all cause deposits of amyloid proteins in the body’s organs and tissue, and the amyloidoses are classified by […]
- Amyloidosis Typesby ModSupport on January 20, 2023
AL Amyloidosis AL Amyloidosis (Also known as Primary Amyloidosis) can be caused by bone marrow cancer, but not always. The truth is that no one really knows why this occurs, but what they do know is that the antibodies ( that are supposed to protect you are somehow not created properly in the bone marrow-so rather than break down and get recycled, […]
- Spotlight on Our Moderatorsby BF_Writer on September 7, 2022
Ben Munoz – October 31, 2019 When we recently asked our moderators what they love about their role, we got a variety of reactions. Not surprising: each of our “mods” does their job in their own way! Some are very active in the conversation, and others take a more hands-off approach, intervening only when there might be a problem. We think […]
- “Rare Diseases Doesn’t Have Us” – Foot and Float to Raise Awarenessby BF_Writer on September 7, 2022
Ben Munoz – August 15, 2019 We did It! Ten Ben’s Friends members traveled for more than 500 miles on foot and afloat to raise awareness and to raise money to start new Ben’s Friends Communities. This proves that although “WE HAVE RARE DISEASE -RARE DISEASE DOESN’T HAVE US”. We started the night before departing for Glacier National […]
- When “Rather Rare” Becomes “Done Well”by BF_Writer on September 7, 2022
Ben Munoz– November 1, 2019 I remember talking, not so long ago, with one of our AVM veterans. He has been battling this disease for 41 years now. When it was first discovered no one within 500 miles knew what it even was, let alone how to treat it. He says that it was a very scary time. Not only because of major surgery as an 8th grader but […]
