Living with 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.
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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.
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Newbies Guide to OPMD
Included in this category are resources written by members by members and notes from the moderators. We strongly encourage all members to explore these pages. This category will grow over time to include more and more information
Link to Web MD Article
Link to Wikipedia
Link to Muscular Dystrophy Association
General discussion about a wide range of topics related to
Has anyone considered a mobility dog and had a successful outcome?
Are You PABPN 1 Positive or Negative
New Member Introductions
New members, start your experience here. Introduce yourself and share your story. Let us welcome you
My Story (Jersey Girl)
News From Bens Friends
BioBlast Pharma announces phase 2 results (Sponsored Post)
Events of interest to OPMD Patients and our Communities. Just email to have the staff add your event.
Welcome to Complementary Therapies! This is the place to discuss the array of complementary healing modalities that many of us rely on to help us live healthier lives. Whether you're looking to do more to promote your own health while undergoing medical treatment, or are waiting to get medical treatment and are looking to do what you can to feel better in the meantime, this is the place to post your questions and information. We will discuss everything from acupuncture and chiropractic to nourishing our bodies, minds, and spirits. This is the place to discuss healing modalities that can complement medical treatment
Throat Stretching Procedure
Having a rough day? We're here to listen.
Suicide Hot Line Numbers
Dealing with the emotions that come with having OPMD
Frustration and OPMD
Prayer and Healing Energy Requests
A place to request prayers and healing energy for yourself or others, from our community of caring, supportive friends, for any issue(s) we deal with.
Discussion about this site, its organization, how it works, and how we can improve it.
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