Welcome Members!

Welcome to Life with Multiple Myeloma Community!

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.

Multiple Myeloma is a cancer of the plasma cells which are responsible for producing antibodies. In multiple myeloma, collections of abnormal plasma cells accumulate in the bone marrow, where they interfere with the production of normal blood cells. Most cases of myeloma also feature the production of a paraprotein, an abnormal antibody which can cause kidney problems. Bone lesions and hypercalcemia (high calcium levels) are also often encountered.

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. But Life with Multiple Myeloma 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.

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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

  • New community page
    by ModSupport on September 17, 2021

    Dear members of Living with Multiple Myeloma Your LifeWithMultipleMyeloma support comunity address is now:https://forum.lifewithmultiplemyeloma.org/ Please bookmark that, and we’ll see you there. Seenie from Admin. ===== (catch up story follows) Not long ago, we explained about the new landing page which you’d be seeing soon: Heads up! Happening soon General One day […]

  • Heads up! Happening soon
    by ModSupport on September 15, 2021

    One day soon, you will point your browser (or your DiscourseHub mobile app) in the direction of www.lifewithmultiplemyeloma.org and there you’ll be … in a completely different place! Well, not completely different: the page on which you’ll find yourself will be the new landing page for this community. From there, you will simply have to click on “Community” and you’ll be on the old […]

  • Screen names – Ben’s Friends values your privacy
    by ModSupport on July 21, 2021

    Some of you may have noticed that your screen name now appears different. If you had your full name as your screen name, I changed it in order to better protect your privacy. If the shortened name is not to your liking, please private message me by clicking on the ModSupport icon and let me know what you would rather your name be, and I’ll change it. Sharon from ModSupport @trust_level_0 […]

  • How is a Ben’s Friends Community Different from Social Media and other Support Sites?
    by Bens_Friends on July 14, 2021

    Are you wondering how a Ben’s Friends community is different from social media and other support sites? The Ben’s Friends community for this rare disease is interested in only one thing: you. You as a person, and you and your struggles as a patient. We’re not interested in knowing your name or where you live. We won’t even allow you to use your real name when you register for one of our […]

  • BIG Covid Vaccine Questions
    by Bens_Friends on March 15, 2021

    New members arrive at Ben’s Friends with lots of questions, as well as a need for social support. That’s why we’re here. But these days the really big questions on peoples’ minds are about Covid vaccines. The advice we give here is friend-to-friend. It’s not evidence-based medical advice, even if many of us see ourselves as local experts in our own conditions. Opinions and advice about […]

  • Come to a Free Webinar!
    by Bens_Friends on March 8, 2021

    You’re invited to a free Webinar on March 10th Even though we don’t have a community for people whose lives have been impacted by Short Bowel Syndrome, we’re delighted that our Ben’s Friends Rare Diseases club at University of Toronto has invited us to join them at this event. Special guest at the Webinar will be Swapna Kakani, who is a vibrant and dynamic speaker. Swapna speaks not only […]

  • Fwd: Ben’s has an APP for that!
    by Bens_Friends on January 28, 2021

    @trust_level_0 1 post – 1 participant Read full topic

  • Share your glimmer of light!
    by Bens_Friends on December 31, 2020

    Trying to forget 2020? Oh yes, same here. But DON’T forget that there were some good things that happened to us this year too! Let’s put our heads together and come up with a list of small but good things to make us smile as 2020 passes – thank goodness – into history. What was your small but good thing this year? Do tell! It will do everyone good to see some points of light! Sharon from […]

  • Always Here for You: Your Ben’s Friends Community
    by Bens_Friends on December 22, 2020

    It’s been a long, tiring, frustrating year. And the holiday season isn’t always the easiest time for people. If you are feeling lonely, or you just need to touch base and talk, please remember that your Ben’s Friends community is there for you. Although your community may be very quiet, the Ben’s Friends team will do our best to make sure that you will be able to make contact with someone […]

  • Here for you: Ben’s Friends
    by Bens_Friends on December 22, 2020

    Yes, it’s been a long, tiring, frustrating year. And the holiday season isn’t always the easiest time for our members. If you are feeling lonely, or you just need to touch base and talk, please remember that your Ben’s Friends community is there for you. Although your community may be quiet, we’ll do our best to make sure that you will be able to make contact with someone from Ben’s […]