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

  • Some tips on how to improve your mental and emotional health
    by Ben_Munoz on August 2, 2022

    Sascha Gallardo – June 7, 2021 Having a rare or chronic illness can be a source of stress. The different symptoms alone, even the mild pain and fatigue, can already lower one’s mood. Add to these symptoms the financial concerns, the worry about the treatment process, and not being able to do some of the things you love. Mental and emotional health are essential to physical well-being. Stress […]

  • Ben’s Friends to launch Ben’s Connections soon
    by Ben_Munoz on August 2, 2022

    Sascha Gallardo – January 31, 2022 Ben’s Friends communities were created so that people affected by a rare or chronic illness can have a place to connect with others like them. Through the years, we have witnessed countless times how being able to get in touch with other rare disease patients or caregivers has helped our members. As many of them say, just knowing that there are people who […]

  • MakeMeSmile makes donating to Ben’s Friends through AmazonSmile much easier
    by Ben_Munoz on August 2, 2022

    Sascha Gallardo – February 23, 2022 Donating to Ben’s Friends through the AmazonSmile Charity Lists program is now easier with the help of MakeMeSmile, a free Chrome extension. Ben’s Friends is one of the charities participating in the AmazonSmile Charity Lists program. Everytime you purchase eligible items through AmazonSmile, you donate .5% of the price to your chosen charity, at no cost […]

  • Connect with Ben’s Friends!
    by Ben_Munoz on August 1, 2022

    Sascha Gallardo – July 1, 2022 Good news! You can now receive a copy of Ben’s Friends’ quarterly e-newsletter. By subscribing to our newsletter, you will: Get updates about our new and existing projects. Aside from keeping our communities safe and supportive, Ben’s Friends is also working on other projects that will benefit patients, their families, and loved ones. These include, among […]

  • Some of the Autoimmune Rare Diseases in Ben’s Friends List of Communities
    by Ben_Munoz on August 1, 2022

    Sascha Gallardo – July 1, 2022 The immune system is supposed to protect us by attacking bacteria and viruses. For people who have autoimmune diseases, however, their immune system attacks their own cells. This can cause a range of problems depending on the disease they have. Autoimmune diseases have no cure. Patients usually rely on different forms of treatment and lifestyle changes for most […]

  • Ben’s Friends Self-Advocacy Project for Members
    by BF_Writer on July 11, 2022

    Sascha Gallardo – January 31, 2022 Ben’s Friends to launch Self-Advocacy Project for members Having a rare and chronic illness is definitely not easy. From searching for an accurate diagnosis to finding the doctor you can trust as well as undergoing different forms of treatments and procedures, all these things and more certainly bring a lot of challenges. Despite these, however, we believe […]

  • 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 […]