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

  • Shop With AmazonSmile This Summer And Help Change Patients Lives
    by Bens_Friends on June 13, 2022

    Father’s Day. Graduations. All Summer Needs. Do some “feel-good” shopping and change a rare disease patient’s life today. Go to smile.amazon.com Click “Get started” Once signed in, you will be prompted to pick a charity- Ben’s Friends AmazonSmile Foundation will donate 0.5% of the purchase price of most items. Thank you for being a friend. Ben 1 post – 1 participant […]

  • A Word about Covid Vaccines
    by Bens_Friends on January 3, 2022

    “Whether or not you choose to get vaccinated is a personal choice. Somehow, someway choice has become a political statement. Ben’s Friends Communities are for peer to peer support, not politics. While Covid is a concern of our membership, we are not social media. Anytime discussion veers to politics, religion, or off topic, that discussion will be moderate either moved to a private discussion […]

  • Fwd: Holiday Help and Best Wishes
    by Bens_Friends on December 24, 2021

    We know. It’s been another long, tiring, frustrating year. We hope you will have exactly the kind of holiday that you want and need. But we also know that 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 very […]

  • Holiday Help and Best Wishes
    by Bens_Friends on December 24, 2021

    It’s been another long, tiring, frustrating year. And the holiday season isn’t always the easiest time for people. We hope you will have exactly the kind of holiday that you want and need. 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 […]

  • Check out the Ben’s Friends Blog
    by Bens_Friends on November 30, 2021

    Be sure and check out our Blog for the latest on Ben’s friends patient communities and the Disease/Conditions that we provide patient support for: https://blog.bensfriends.org/ 1 post – 1 participant Read full topic

  • Giving Tuesday on Facebook: Part Deaux
    by Bens_Friends on November 27, 2021

    On Tues November 30 Facebook is matching all donations up to 8 million dollars. Can you help us out? We know patients are stretched thin and we are NOT asking you to participate unless you are able. BUT it’s possible that people in your social circle are able to help and with the possibility of their donation being matched by FB the opportunity for us to continue and expand our work is endless. […]

  • Can you help us out with Facebook Giving Tuesday?
    by Bens_Friends on November 24, 2021

    On Tues November 30 Facebook is matching all donations up to 8 million dollars. Can you help us out? We know patients are stretched thin and we are NOT asking you to participate unless you are able. BUT it’s possible that people in your social circle are able to help and with the possibility of their donation being matched by FB the opportunity for us to continue and expand our work is endless. […]

  • Community Guidelines
    by ModSupport on November 11, 2021

    This is a Civilized Place for Public Discussion Please treat this discussion forum with the same respect you would a public park. We, too, are a shared community resource — a place to share skills, knowledge and interests through ongoing conversation. This site is a virtual community intended to be a safe place for patients and family members as young as age 13, to visit for information, […]

  • New! Caregiver Support Community
    by Bens_Friends on November 11, 2021

    We know. Being a caregiver is tough: sometimes it’s challenging physically, and it’s always difficult socially and emotionally. That’s why caregivers now have a place to meet anonymously and support each other. Today we are highlighting the news about our newly renovated CaregiverSupportCommunity.org community. Like all Ben’s Friends Communities, our Caregiver Support Community is as […]

  • Please pass this on to Your Caregiver
    by Bens_Friends on November 11, 2021

    We know. Being a caregiver is tough: sometimes it’s challenging physically, and it’s always difficult socially and emotionally. That’s why caregivers now have a place to meet anonymously and support each other. Today we are highlighting the news about our newly renovated CaregiverSupportCommunity.org community. Like all Ben’s Friends Communities, our Caregiver Support Community is as […]