Welcome Members

Welcome to Living with OPMD Patient 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.

This is an online support group for patients, friends and families affected by OPMD. 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

  • Heads Up! Happening Soon
    by ModSupport on April 28, 2022

    One day soon, you will point your browser (or your DiscourseHub mobile app) in the direction of https://livingwithopmd.org/ and there you’ll be … in a completely different place! Well, not […]

  • A Word about Covid Vaccines
    by Bens_Friends on January 3, 2022

    "Whether or not you choose to get vaccinated is a personal choice. Somehow, someway choice has become a political statement. Ben’s Friends Communities are for peer to peer support, not politics. […]

  • Fwd: Holiday Help and Best Wishes
    by Bens_Friends on December 24, 2021

    We know. It’s been another long, tiring, frustrating year. We hope you will have exactly the kind of holiday that you want and need. But we also know that the holiday season isn’t always the […]

  • Holiday Help and Best Wishes
    by Bens_Friends on December 24, 2021

    It’s been another long, tiring, frustrating year. And the holiday season isn’t always the easiest time for people. We hope you will have exactly the kind of holiday that you want and need. If you […]

  • Check out the Ben's Friends Blog
    by Bens_Friends on November 30, 2021

    Be sure and check out our Blog for the latest on Ben’s friends patient communities and the Disease/Conditions that we provide patient support for: https://blog.bensfriends.org/ 1 post - […]

  • Giving Tuesday on Facebook: Part Deaux
    by Bens_Friends on November 27, 2021

    On Tues November 30 Facebook is matching all donations up to 8 million dollars. Can you help us out? We know patients are stretched thin and we are NOT asking you to participate unless you are able. […]

  • Can you help us out with Facebook Giving Tuesday?
    by Bens_Friends on November 24, 2021

    On Tues November 30 Facebook is matching all donations up to 8 million dollars. Can you help us out? We know patients are stretched thin and we are NOT asking you to participate unless you are able. […]

  • New! Caregiver Support Community
    by Bens_Friends on November 11, 2021

    We know. Being a caregiver is tough: sometimes it’s challenging physically, and it’s always difficult socially and emotionally. That’s why caregivers now have a place to meet anonymously and […]

  • Please pass this on to Your Caregiver
    by Bens_Friends on November 11, 2021

    We know. Being a caregiver is tough: sometimes it’s challenging physically, and it’s always difficult socially and emotionally. That’s why caregivers now have a place to meet anonymously and […]

  • Community Guidelines
    by ModSupport on November 10, 2021

    This is a Civilized Place for Public Discussion Please treat this discussion forum with the same respect you would a public park. We, too, are a shared community resource — a place to share […]