Finding support for OPMD? Connect with people like you.

A welcome banner for Living With OPMD community featuring a hopeful patient and caregiver

 

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.

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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

  • Become a Champion for Our Rare Disease Community
    by ModSupport on November 19, 2024

    Thank you for being an essential part of our Ben’s Friends community. Today, I want to invite you to take your support a step further by becoming a fundraiser for our “Friends Helping Friends” […]

  • Join Us in Strengthening Our Rare Disease Community
    by BenM on November 15, 2024

    I hope this message finds you well. As a valued member of our Ben’s Friends community, I’m reaching out to share an important initiative that directly impacts the support we provide to […]

  • An Opportunity to Strengthen Our Rare Disease Community
    by ModSupport on November 13, 2024

    I hope this message finds you well. As a valued Ben’s Friends community member, I wanted to reach out about an important initiative. In the coming days, we’ll be launching a campaign that gives […]

  • We Need Your Financial Support
    by ModSupport on July 13, 2024

    Dear OPMD Community, From the beginning of Ben’s Friends Rare Disease Communities, we have desired to provide these sites free of charge to our patients and their families. However, it costs us […]

  • Welcome New Members for the Month of March!
    by BenM 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 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 […]

  • 7 Things to Look for When Choosing a Doctor
    by 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 Moderators
    by 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 […]

  • “Rare Diseases Doesn’t Have Us” – Foot and Float to Raise Awareness
    by BF_Writer on March 28, 2023

    Ben Munoz – August 15, 2019 We did It! Ten Ben’s Friends members traveled for more than 500 miles on foot and afloat to raise awareness and to raise money to start new Ben’s Friends […]