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.
How is Ben’s Friends Different from Social Media and Other Support Sites?
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.
- Preparing for Your Doctor’s Appointmentby BF_Writer on August 11, 2022
Sascha Gallardo – October 13, 2020 Getting the most out of your consultation with a doctor for a rare disease is already challenging. Now that we are also dealing with the Covid-19 pandemic, the challenge has been doubled. Considering the difficulty of getting an appointment and the risks associated with going to a hospital and being exposed to the virus, it is important to be well prepared […]
- How to prepare for a surgeryby BF_Writer on August 3, 2022
Sascha Gallardo – May 11, 2021 After so many doctors appointments, you finally have a diagnosis. And as part of the treatment plan, you have to undergo a surgery. Although each type of surgery is certainly different from the other and would require some specific preparations, having a general idea of what needs to be done before the operation can help you better cope both with the surgery and […]
- Some tips on how to improve your mental and emotional healthby BF_Writer on July 29, 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 soonby BF_Writer on July 27, 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 easierby BF_Writer on July 21, 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 to […]
- Connect with Ben’s Friends!by BF_Writer on July 18, 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 Communitiesby BF_Writer on July 11, 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 Membersby 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 […]
- 5 tips on how to help patients better manage inclusion body myositisby BF_Writer on July 7, 2022
Sascha Gallardo – August 26, 2021 Inclusion Body Myositis is a type of myositis that usually affects males above the age of 50. It’s symptoms include a progressive weakening of the muscles, usually in the hands, arms, legs, and thighs. Each patient’s case, however, is different from the other. Some cases progress more slowly while others at a faster rate, especially the much older patients. […]
- Shop With AmazonSmile This Summer And Help Change Patients Livesby 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 […]