Living with OPMD 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.
OPMD (Oculopharyngeal Muscular Dystrophy) is one of several types of muscular dystrophy (MD). MD is a group of genetic, degenerative diseases primarily affecting voluntary muscles. Although named for the muscles first affected, the eyelids (oculo) and throat (pharyngeal), OPMD also can affect facial and limb muscles. OPMD symptoms usually appear during adulthood most, often between 40 and 60 years of age. Although OPMD is a progressive disease, its progression is usually fairly slow. There is no cure for OPMD, but there are a number of therapies, surgeries, and corrective devices such as “crutch eyeglasses” that can help patients cope with this disease. There are also a number of drug therapies on the horizon that may offer relief from some symptoms.
The Genetic and Rare Diseases Information Center of The National Institutes of Health are an excellent source of rare disease information. Their OPMD information can be found here.
Ben’s Friends’ LivingWithOPMD.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.
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
- Last Chance to Support Ben’s Friends in 2024 - Every Donation Counts!by Ben_Munoz on December 30, 2024
As we count down the final hours of 2024, I want to personally thank the 100+ donors who have already contributed over $27,000 to our Friends Helping Friends campaign. Your generosity is nothing […]
- From Isolation to Connection: The Role of Community Supportby Ben_Munoz on December 19, 2024
As we approach the end of our year-end campaign, I wanted to share a powerful reminder of the impact your support makes. A Message from the Heart: We’ve just received an incredibly moving video […]
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Campaign Update: If you have already donated to the campaign, THANK YOU. We are well over $15,000 for the campaign and the Matching Gift Challenge is really heating up (over 20 donors have already […]
- Exciting Update: Double Your Impact for Rare Disease Support!by Ben_Munoz on December 13, 2024
I hope this message finds you well. As we approach the end of the year, I wanted to share an exciting update on our “Friends Helping Friends” campaign and a special opportunity to double your […]
- This Giving Tuesday, Make Sure No One Faces Rare Disease Aloneby Ben_Munoz on December 2, 2024
As we approach the end of the year, I’m reaching out with an urgent request on behalf of thousands of patients with rare diseases and chronic illnesses who rely on Ben’s Friends for support and […]
- Welcome New Members for the Month of March!by Ben_Munoz on April 1, 2024
Welcome to our patient community @Nantes and @Friend! We’re so glad you’ve joined us. You will love the friends you meet here, they are awesome. Feel free to share your story, ask questions, and […]
- Looking For Your OPMD Stories!by ModSupport on January 11, 2024
@trust_level_0 Dear OPMD 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 […]
- 📢 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 […]
- 7 Things to Look for When Choosing a Doctorby BF_Writer on May 4, 2023
Sascha Gallardo – November 1, 2022 When you are experiencing symptoms and know that something is wrong, do you settle with the first doctor you meet? Like many other patients, do you also think […]
- Spotlight on Our Moderatorsby BF_Writer on March 29, 2023
Ben Munoz – October 31, 2019 When we recently asked our moderators what they love about their role, we got a variety of reactions. Not surprising: each of our “mods” does their job in their own […]
