Medical Professionals who Can Help

 

Although there is not yet a cure or effective medical treatment for FSHD, its physical, logistical and emotional effects can be managed, coped with and mitigated.  There are an increasing number of medical professionals from a variety of disciplines with experience in FSHD and other muscular dystrophies – including neurologists, physiatrists (medical doctors specialized in physical medicine and rehabilitation), orthopedic surgeons, otolaryngologists (Ear/Nose/Throat specialists), audiologists, orthotists (specialists in orthotics - orthopedic devices such as ankle braces), physical therapists (PT’s), occupational therapists (OT’s) and respiratory therapists (RT’s).  This section of this website and the section “Health Information about FSHD” describe each of these specialists. 
   
The degree of knowledge, experience, bias, resources, access to expertise, and communication skills doctors and therapists have varies greatly.  A wise medical professional knows that his or her knowledge and experience are limited, especially as medical knowledge increases over time, and will actively welcome and consult with experts from other disciplines.   Dealing effectively with FSHD requires a team approach, and ideally each member of the team should have experience with FSHD patients, or at least with patients with other muscular dystrophies.  If you can’t find someone with the right expertise or who is willing to consult with an expert, it’s advisable to keep looking. If expertise is not available where you live, consider traveling for a consultation with an expert.    

It is critical to communicate effectively, frankly and completely with your medical caregivers.  Tell them not only about your FSHD symptoms, but also about your: job; lifestyle; diet; other medical conditions; sources of stress; home environment; activities of daily living; medications; and all exercises and practices you have tried, are doing and are considering.  Remember that your doctors and therapists have many patients, and what’s foremost in your mind may not be prominent in theirs.  Something you told them last year may not be recorded in the chart notes and they may not remember it.
 
Although FSHD is a common adult muscular dystrophy, the absolute number of people with FSHD is not large compared to more prevalent diseases.  You may be your primary care doctor’s only current patient with FSHD, and perhaps the only one in an entire career.  No matter how superb their primary care doctors may be, many FSHD patients see a neurologist from time to time to monitor the progression of their FSHD, keep abreast of developments in care and get prescriptions for physical therapy, occupational therapy, respiratory therapy and other helpful resources. 

Medical professionals can help you manage your FSHD.  They care, they are expert, they are dedicated, they are creative and they will listen, but they don’t and can’t know everything.  Each FSHD patient is different, and nobody knows you as well as you do.  Each person has the right and ultimate responsibility to make decisions about managing his or her FSHD. 

• The Neurologist and FSHD
• The Pulmonologist and FSHD
• Respiratory Therapists and Breathing
• Orthopaedic Surgeons, Scapular Fixation and FSHD
• Anesthesiologists, Surgery and FSHD
• The Physiatrist and Rehabilitation Medicine in FSHD
• Physical Therapists and Exercise
• Occupational Therapists and Assistive Technologies
• The Orthotist and Orthotics
• Otolaryngologist (Ear/Nose/Throat Specialist) and FSHD
• The Audiologist and Hearing

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The information on this website is provided for general informational and educational purposes only.  The FSH Society and this website do not provide medical advice or recommendations.  Licensed physicians and other medical professionals who are familiar with an individual’s specific health situation should be consulted for diagnosis and treatment of Facioscapulohumeral Muscular Dystrophy and any other medical conditions.  Neither the FSH Society nor any contributor to this website can be liable or responsible for any result derived from the use of this material.