LGMD Support Groups on Facebook:

Social media has profoundly changed the way people with LGMD connect to others — around the corner and around the world.  Thankfully, LGMD patients and their family members are now able to access peer support via the internet.    No longer do individuals diagnosed with LGMD, family members and/or caregivers have to feel alone in dealing with this rare disease.   Through Facebook, a number of on-line LGMD related peer support groups have been established.  ** An active Facebook account is required **

Some of the LGMD related support groups accessed through Facebook include:

Forums for sharing support, experiences, and thoughts about living with LGMD.  (Most are “Closed” Facebook Groups for privacy…individuals must “Request to Join”)

 

 

  • A forum specifically for those who have limb-girdle weakness and an undiagnosed subtype of Muscular Dystrophy to share history, symptoms and other information with the goal of getting a confirmed genetic diagnosis.  (This is a “Closed” Facebook Groups for privacy…individuals must “Request to Join”)

 

  • A forum specifically for spouses and/or caregivers.   (This is a “Closed” Facebook Groups for privacy…individuals must “Request to Join”)

 

 

  • A forum for teens living with Muscular Dystrophy. (This is a “Closed” Facebook Groups for privacy…individuals must “Request to Join”)

 

  • A forum for moms, stepmoms, adoptive moms, and expecting moms living with Muscular Dystrophy — or even ladies with MD who would like to have children one day and would benefit from asking questions.  (This is a “Closed” Facebook Groups for privacy…individuals must “Request to Join”)

 

 

  • A forum, where individuals with Muscular Dystrophy can ask questions and share experiences about obtaining Disability Benefits including Social Security Disability Insurance (SSDI,), Supplemental Security Income (SSI), and Private Disability Insurance (LTD).

 

 

  • A forum for discussing weight loss for individuals who have muscular dystrophy such as LGMD

 

  • A forum for discussing pulmonary issues and other breathing concerns regarding living with muscular dystrophy This is a “Closed” Facebook Groups for privacy…individuals must “Request to Join”  
    •  Breathe with MD – A support group for MD patients, parents and/or caregivers to discuss topics related to pulmonary function decline and for those on non-invasive and invasive ventilation to share tips and insights.

 

  • The following Facebook page offers a “private” – member only/invitation based support group for the muscular dystrophy community.   You can learn more at
    • Neuromuscular Disease MD Patient Group (sponsored by The Speak Foundation) –  This private or secret group is for individuals with muscular dystrophy to share.  This group is only for the person dealing with the disease as some topics are so personal.  Contact the Speak Foundation for entry into their private peer support group.

 

*** PLEASE NOTE:  if you know of an LGMD Facebook group that should be added to this resource list, please e-mail us.

 

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