Life with Multiple Myeloma is an online patient support community that is powered by BensFriends.org, a network of patient support communities for rare diseases. 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.
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
- Help Accelerate Research, Earn up to $550by ModSupport on May 6, 2024
Did you know your white blood cells can make a big difference? By donating these cells through a process called apheresis, you can help researchers find new life-saving therapeutics and develop medical breakthroughs for multiple myeloma. Sanguine Biosciences is looking to enroll patients in a two-visit research study, conducted at a local blood donation center. By donating white blood cells, you […]
- Help Advance Multiple Myeloma Researchby ModSupport on May 6, 2024
Did you know your white blood cells can make a big difference? By donating these cells through a process called apheresis, you can help researchers find new life-saving therapeutics and develop medical breakthroughs for multiple myeloma. Sanguine Biosciences is looking to enroll patients in a two-visit research study, conducted at a local blood donation center. By donating white blood cells, you […]
- Looking For Your Multiple Myeloma Stories!by ModSupport on January 10, 2024
@trust_level_0 Dear Multiple Myeloma Support Member, For over 10 years, the Ben’s Friends online rare patient communities, run & moderated by rare patients themselves, have been a source of support for many of us, living with rare diseases. But it’s not enough. We would like more people to know about this wonderful service. To that effect, we are planning a social media campaign that will […]
- 📢 Calling mothers of children with rare diseases of all agesby ModSupport on August 12, 2023
Ben’s Friends has launched a new community for moms raising children with rare diseases and chronic conditions and we are inviting you to join Warrior Moms Living with Rare Disease Warrior Moms Living with Rare Disease Warrior Moms fighting rare diseases together. Please share the community with other families who are affected. 70% […]
- Have you heard of Multiple Myeloma?by Ben_Munoz on May 4, 2023
Sascha Gallardo – March 28, 2023 Being diagnosed with cancer can have a tremendous impact on the patient’s life. From dealing with the diagnosis emotionally, to finding the care team they can rely on and living with the treatment side effects. Some patients, however, are affected by a rare type of cancer. As defined by the National Cancer Institute, a rare cancer affects less than 40,000 […]
- Ben’s Friends Members to Benefit from Cutting-edge Health Data Management Toolby Ben_Munoz on May 4, 2023
Sascha Gallardo – January 14, 2020 Members of Ben’s Friends patient communities can soon take advantage of a state-of-the-art technology that will enable them to manage their medical information in a secure multilingual digital tool, give them access to an online referral service for physicians and clinics, and let them participate in research that will benefit the rare disease community. […]
- Ben’s Friends Brings Learning About Patient Support to the Next Levelby Ben_Munoz on April 26, 2023
Sascha Gallardo – January 20, 2020 Ben’s Friends created a user-friendly online training facility that makes learning about providing support to patients simple and easy. Dubbed as Ben’s Friends U or Ben’s Friends University, it makes use of Google Classroom to create one virtual classroom for Moderators and another one for the Interns. Using this G-suite tool, the Ben’s Friends team is […]
- Spotlight on our Member: John aka Jokhere from Living with Polyneuropathy Communityby Ben_Munoz on April 26, 2023
Sascha Gallardo – March 7, 2020 Polyneuropathy is often characterised by numbness, tingling sensation, burning pain and even paralysis of the hands and feet which can later on progress to the other parts of the body such as the arms and legs. This condition can be either acute, which appears suddenly but resolves slowly, or chronic which progresses gradually. It has different classifications […]
- Hanging Out is Helping Out: The Cycle of Helping Each Other at Ben’s Friendsby Ben_Munoz on April 12, 2023
Clasina Field – May 21, 2020 Helping others is good for your body as well as your mind. That’s what the article The Science of Helping Out said, anyway. And when the scientists measured the various benefits, they concluded that the giver gains at least as much as the receiver does. Everyone wins when we help each other. How great is that? So, as Tara Parker-Pope explained, “[t]o help […]
- Ben’s Friends Communities Can Help Advance Medical Treatmentsby Ben_Munoz on April 6, 2023
Sascha Gallardo – June 10, 2020 The anonymity of members in Ben’s Friends communities allows them to freely share their experiences, doubts and worries. They safely find comfort from fellow patients without revealing their identity. Researchers, at the same time, can gain insights from our communities that could leapfrog the discovery of long-awaited treatments as well as making improvements […]
