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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Facioscapulohumeral muscular dystrophy


Other Names for this Disease
  • Facioscapulohumeral muscular dystrophy 1A
  • FSHD
  • FSHD1A
  • FSHMD1A
  • Landouzy-Dejerine muscular dystrophy
More Names
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Your Question

Is stem cell therapy being successfully used to treat people with facioscapulohumeral muscular dystrophy (FSHD)? Should people with FSHD exercise? If so, how often and how intensely? Does drinking alcoholic beverages quicken the progression of FSHD? Is there a pharmaceutical drug to slow down the progression?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

Is stem cell therapy being used to treat people with facioscapulohumeral muscular dystrophy?

The Food and Drug Administration has not approved stem cell therapy for the treatment of facioscapulohumeral muscular dystrophy. Clinical trials are investigating the use of this therapy for treatment of other forms of muscular dystrophy. Visit clinicaltrials.gov to view these trials. In the United States private companies have infused patients with a variety of conditions with stem cells. FDA cautions consumers to make sure that any stem cell treatment they are considering has been approved by FDA or is being studied under a clinical investigation that has been submitted to and allowed to proceed by FDA. Click here to learn vist the FDA Web site and learn more about stem cell treatments in the United States.

The Muscular Dystrophy Association provides information regarding the state of stem cell therapies for treatment of muscular dystrophies on their Web site at the following link.
http://mda.org/quest/research-briefs-stem-cells
Last updated: 2/4/2014

Is exercise recommended for people with facioscapulohumeral muscular dystrophy?

Yes. Exercise is generally recommended for people with facioscapulohumeral muscular dystrophy (FSHD).  People with FSHD may benefit from aerobic exercise at least three times a week for 30 minutes at an intensity to reach their age-adjusted target heart rate. Visit the American Heart Association Web site to learn how to calculate your target heart rate. If aerobic exercise is not possible, people with FSHD may benefit from moderate intensity resistance training.[1]
Last updated: 2/3/2014

Does alcohol consumption speed the progression of facioscapulohumeral muscular dystrophy?

In our search we did not find information regarding alcohol consumption and facioscapulohumeral muscular dystrophy specifically. We recommend that you speak with your doctor before drinking alcohol.

According to the Muscular Dystrophy Association, moderate amounts of alcohol isn't harmful to most people with neuromuscular disease in general. However the effects of alcohol may magnify exisiting problems with movement, coordination, sleep, swallowing, and breathing.  Alcohol should be consumed in a safe situation with others around. Also, be sure to think about any other conditions or medications that you are on and the effect alcohol may have on these.[2]
Last updated: 2/3/2014

Are there medications to slow the progression of facioscapulohumeral muscular dystrophy? 

No. Currently there are no medications that have been shown to slow the progression of facioscapulohumeral muscular dystrophy (FSHD).
Last updated: 2/3/2014

References