Welcome Members!

Welcome to Myositis Support 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.

MyositisSupport.org is an online support group for patients, friends and families affected by Myositis, which is also called Idiopathic Inflammatory Myopathy.  Myositis is an inflammation of the muscles, which can be caused by injury, infection, reaction from certain medications, and even exercise. Some forms of Myositis are chronic and idiopathic, meaning the cause is unknown or not well understood. Types of Myositis include dermatomyositis (DM), polymyositis (PM), juvenile myositis (JM), and inclusion-body myositis (IBM).

National Institutes of Health GARD (Genetics and Rare Diseases Information Center) has a user-friendly medical resource page here

Ben’s Friends’ MyositisSupport.org 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 MyositisSupport.org 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.

Read More…

 

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

  • Looking For Your Myositis Stories!
    by Modsupport on January 10, 2024

    @trust_level_0 Dear Myositis 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 […]

  • Check this Opportunity Out
    by Modsupport on December 30, 2023

    A clinical trial opportunity for adults living with dermatomyositis is enrolling now! If you or someone you know are an adult living with dermatomyositis symptoms despite current or prior treatment, the VALOR Study may be a good fit. The VALOR Study is testing whether the investigational medication brepocitinib, in the form of tablets taken by mouth, will improve skin and muscle problems seen in […]

  • Clinical Trial Opportunity
    by Modsupport on December 30, 2023

    Living with dermatomyositis? The VALOR Study is a clinical trial for adults with dermatomyositis who are not finding symptom relief with current or past treatment. Visit VALORStudy.com to learn more and check eligibility. 1 post – 1 participant Read full topic

  • 📢 Calling mothers of children with rare diseases of all ages
    by 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% […]

  • Spotlight: Ben’s Friends former Intern, Dr. Melissa Jones, MD
    by BF_Writer on April 13, 2023

    Sascha Gallardo – June 15, 2020 The patients who visit our sites have tons of questions on their mind related to their symptoms, which clinic to visit, the medications they are taking, and the treatment procedures they will undergo. They want a space to find answers as well as comfort from people who truly care. The Ben’s Friends team, on the other hand, interacts with the members on a daily […]

  • Ben’s Friends inks partnership with ClozTalk
    by BF_Writer on March 21, 2023

    Sascha Gallardo – July 1, 2020 We’re excited to announce that Ben’s Friends has partnered with ClozTalk, a social impact company that helps charities raise people’s awareness of their mission. ClozTalk now designs apparel like t-shirts, hoodies, and jackets with the logo of Ben’s Friends. As more people get to know our organization through the sale of these items, we can reach more […]

  • Rare Disease Diagnosis: Difficulties and Advancements
    by BF_Writer on March 8, 2023

    Sascha Gallardo – August 31, 2020 Delays in getting an accurate diagnosis for a rare disease is very common. Patients would visit a physician, present their symptoms, and then they would be told there is nothing wrong with them. They’d visit another one, would be referred to a specialist, and then get some tests done only to go back to square one after a few months. The same process would be […]

  • Global Genes’ Rare Daily website features Ben Munoz
    by BF_Writer on March 6, 2023

    Sascha Gallardo – September 29, 2020 Ben’s Friends co-founder and chairman, Ben Munoz, was interviewed recently for the Rare Leader, a regular feature of the Global Genes’ Rare Daily website. In the Q&A piece, Ben shares how the organization started, its mandate and strategy, new projects and management philosophy. Ben underscores how important focus is in keeping the organization […]

  • Some of Ben’s Friends secrets to maintaining healthy communities
    by BF_Writer on February 22, 2023

    Sascha Gallardo – October 26, 2020 Ben’s Friends has been successfully running online patient communities for thirteen years and it just continues to grow. We are home to the most active communities of AVM survivors, people living with psoriatic arthritis, fibromyalgia, and eagle syndrome, to name a few. Thanks to our moderators who dedicate their time and effort to ensure that our […]

  • What’s Your And? Podcast features Scott Orn
    by BF_Writer on February 13, 2023

    Sascha Gallardo – November 5, 2020 Ben’s Friends co-founder and board member Scott Orn was featured recently in John Garrett’s podcast. Titled What’s Your And?, the podcast focuses on the guests’ interests or what they love to do outside of their job and how these interests affect their work. In the episode, Scott talked about his volunteer work at Ben’s Friends, which is what he […]